tag:blogger.com,1999:blog-40407894132057475402024-02-07T10:29:32.495-08:00Grateful MeA blog written as I journal my way through the ups and downs, the fair and unfair, the joys and disappointments.... all while remembering how very grateful I am.Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.comBlogger290125tag:blogger.com,1999:blog-4040789413205747540.post-2955575734035910462013-07-03T00:05:00.001-07:002013-07-03T00:05:14.985-07:00Surgery is postponed...Elizabeth's admission and testing last week went well. She was in the OR longer than<br />
expected and had a bit of trauma to her colon due to the procedure of<br />
catheter placement being more difficult than usual. this caused extra bleeding and<br />
pain, but she is fine. once again, she showed us all that<br />
is more than amazing in her strength to get through painful,<br />
horrible things. She did it though and now we can put the<br />
awful testing away until the next time.<br />
We were happy to be able to get an unexpected discharge so that<br />
we could be home for the weekend. We headed back to Los Angeles<br />
yesterday in preparation for her scheduled colon surgery today....<br />
but tonight we are home. She is too sick with a sinus infection (and cough)<br />
and the surgical team felt it too unsafe to put her through the surgery today.<br />
It is hard to be mentally and emotionally prepared for such a big surgery and then<br />
have a change in plans, but there's no way she should have gone to the OR today.<br />
She's on a heavy course of antibiotics and, because she can't seem to stay well for<br />
very long, she will have surgery as soon as this course of antibiotics is finished in order<br />
to head into surgery her best and not risk being sick post-op.<br />
Elizabeth handled the frustration of postponing it better than I did. She did voice to all<br />
that she will now not have surgery before her birthday; she's spent birthdays and holidays<br />
in the hospital and if she has a say -which she does- she will not be behind the glass on<br />
July 16th. Surgery is scheduled for the 17th.<br />
The bone marrow biopsy will be done at that time as well.<br />
We just have to trust that His timing is best and be patient.<br />
I'll update more soon.<br />
<br />
<br />Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-75103173396131281652013-06-27T20:36:00.002-07:002013-06-27T20:39:53.417-07:00<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dx38eHOHCbwgu9yJRc7cBrxS4hDhdgfR-IoqGsoL9OaikYuEH31ecULhs08iFn9n8C-KveIueCB_XFnzRlbTQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<br />
a video made for lizzie. turn off the blog music before hitting play. Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-87927061215082035512013-06-23T17:26:00.001-07:002013-06-23T17:26:40.971-07:00UpdateI have not written in months..... too much to say with too little motivation to say it.<br />If you have checked in, in the hopes of praying for my Elizabeth - thank you.<br />
Elizabeth has been in and out of the hospital since I last wrote. She now eats noting by mouth and is on tube feeds 22 hours a day.<br />Tuesday she will be admitted for a few weeks for another bone marrow biopsy, testing and then major colon surgery on July 2nd.<br />And still, she smiles.Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-9399046773249169092013-02-14T16:57:00.000-08:002013-02-14T16:57:13.383-08:00Update<em>Last night I sat shaking uncontrollably. The mind-body connection is amazing and I guess my adrenaline was rushing as I sat thinking of the upcoming week and my body responded.<br />On Monday, our Liz will be admitted to Children's Hospital Los Angeles for a while. We were told days, but we've learned to pack for weeks. On Tuesday she will head to the OR for a procedure to place a PICC line again. Originally, we planned on placing the PICC so that I had IV access at home to provide IV hydration to her. This week plans changed, and the new plan is to have Liz go on gut rest for a while, and receive TPN (IV nutrition) for awhile. <br />While we are at CHLA, the enteral nutrition team will also consult and try and figure out why her zinc keeps dropping so low.<br />The geneticist will have labs drawn for the two syndromes he asked to test her for almost three weeks ago, but I wanted him to justify his reasoning. After hearing Hem/Onc's impression of her last bone marrow slides and after the geneticists argument provided in chart notes and conversation to Liz's pediatrician, we have decided to agree to the labs. I have hesitated sharing the names of the diseases with others, as they are both terminal and that is a dramatic thought, but prayer is powerful and so I share now and ask for prayer that she will test negative for both Pearson's Syndrome and MNGIE (both mitochondrial diseases). I do not think she has either.<br />Hopefully Surgery will consult as well during our stay; it has been decided that Liz needs the cecostomy (surgery to provide colon-access from the outside so that we can do daily flushes) and given her complicated case and so much scarring from all of her previous surgeries, it will be important to have surgeons who are comfortable working on her.<br />Surgery will not take place during this admit. She must first have the colon manomerty studies repeated and a surgical team in place.We plan to come home and return in about a month for the Cecostomy.<br /><br />Please pray for Liz's tolerance and patience. Being in the hospital is rough. Last year she needed the PICC line moved to her other arm a month after placing the first, so she is hesitant and dreading having the line in. Gut rest will be difficult as well, as she won't be able to eat by mouth for weeks-month.<br />We all feel the effects of a hospitalization as Liz and I are away from home. Not being at our local hospital is especially hard because I won't be able to see Jackson or Kate while we are in LA. Walter has been on vacation this week and getting away from work will be difficult since he has just had this time off.<br />We are praying we are making the right choices for our girl-<br /><br />Thank you for continuing to pray and encourage us.</em><br />
<br />
<br />
<br />
<em>Below is an entry I wrote two weeks ago but didn't post. I'll attach to this one for those who have asked the same questions.....</em><br />
<br />
It has been a few weeks since I last posted. I decided to write tonight to address some questions I have been asked or heard others say they have been asked. <br />
<br />
What is wrong with Elizabeth-<br />
<em>Hmm, good question and I wish I knew the answer. If you are looking for an overall diagnosis as an answer, there isn't one yet. It is a complicated explanation....<br />Elizabeth and her identical twin sister Kaitlin both had surgery for severe reflux when they were four months old. Because of lung disease due to constant aspiration, they were both on oxygen for about nine months during their first year of life. After that initial surgery, Katilin (with the exception of a bit of kidney reflux that effected her in her first years) has been healthy. Liz has not been as fortunate and she has required seven surgeries, as her Fundoplication has failed over and over, and her repaired hernias have also required additional repair. She has had a Pyloroplasty as well. In addition to the surgeries, she has had more procedures and hospitalizations than I can count. All of this, as hard as it was, wasn't life-consuming. Liz would have a procedure or surgery and bounce right back. She was considered a kid with a chronic issue (GI) but we never considered her a chronically ill child. Ever. <br />That changed in January of 2010. After a small, simple surgery I noticed that in the weeks following she wasn't herself. She was overly tired, her hair was falling out more than usual and she was bruising. I thought she could be anemic and requested blood work. Her labs showed she had low white cell, red cell and platelet counts and her pediatrician said we'd repeat them and watch it. Over the next six weeks, additional labs all continued to show low counts and Liz had started having low-grade fevers most often at night. She was referred to Hematology/Oncology and had her first bone marrow aspiration and biopsy which revealed abnormal marrow and cell lines, but no cancer. <br />Around the same time, Liz started having trouble fighting off infection. She has had recurrent sinus infections and CDifficile (her last bout of CDiff lasted nine months). Infectious Disease and Immunology came on board and early on there was talk that if it wasn't cancer, perhaps she'd been exposed to a virus, her body was hit hard by it and it may take time for her to recover. That isn't the case and it became obvious that something more was happening.<br />Hem/Onc said maybe something was "brewing" and she continued to have labs drawn every 2-4 weeks to watch her counts. <br />In the meantime, she was getting sick often and we were spending more and more time in the hospital. <br />In the last two years her GI issues have overwhelmingly taken over as well. She was diagnosed with severe FTT (Failure To Thrive) and she had a PICC placed to deliver TPN (IV nutrition) for four months. She now has a GTube (feeding tube in her stomach) to provide supplemental feeding via formula feeds. Hydration is a huge issue now as well and she often requires IV fluids. <br />Her motility issues have lead to chronic impaction (stool) and she has suffered horribly in the last year. In October, she had testing done that shows that her colon isn't contracting on its own which is why she is getting impacted.<br />She has had a total of 5 bone marrow aspirations and biopsies in the past three years and all show that her marrow is hypocellular. <br /><br />I wish there was a diagnosis, wrapped in a bow and delivered to us, so that we could have an overall plan. We may or may not ever get that. In Liz's case, it is almost a chicken or egg first kind of question.... what came first, the GI issues, or something bigger causing the GI issues? The marrow and blood being the primary cause, or nutrition or something else causing the marrow to be abnormal and not recover? <br />I have sat at tables with the heads of multiple departments as they talked about Liz's case and they too play the "which came first" game.</em><br />
<em></em><br />
What is the next step in Liz's care or treatment plan?<br />
<em>Sigh. This too is a tough question as currently, we have some tough decisions to make.<br />As for the bone marrow and blood issues- We have held off on testing her marrow for about 8 months. Our current strategy is to give her nutritional status time to get better (with GTube feeds and better Prealbumin counts) and we will test her again in May or June. IF poor nutrition was the cause of marrow failing to produce (I refuse to use the term marrow failure as docs have used) then now that her status is improving, her marrow will show recovery. That is our hope. If it doesn't show recovery and shows the abnormal cells that it has, then we have a problem.</em><br />
<em>Liz does sinus rinses and takes an inhaled antibiotic (nasal inhalation) multiple times a day to try and hold off sinus infections. For her, antibiotics required to treat infection lead to CDifficile, which is devastating on her system.<br /></em>Some have asked why I am not taking her to other facilities/doctors....<br /><em>The truth is that I am! First of all, our local children's hospital is not some small, hick-town facility. It is a major, recognized hospital with some amazing physicians and programs. Having said that, we have taken her to UCLA, CHLA, Rady's. Cedars Sinai and we have consulted with out of state hospitals as well. Currently, three of her specialists are at CHLA.</em><br />
Kaitlin and Liz are identical twins, why is Kate not sick if one of the possible diagnoses is a genetic disease?<br />
<em>This too is a complicated answer. In short, if Liz does have a genetic disease, Kate could be spared even though they are identical twins. Or, Kate could be a carrier and it will take time or an assault on her body (illness, surgery, pregnancy) to show itself. It is much too complicated to explain in written form, but we have asked the question and understand the answer.<br /></em>Why are we in medical debt when there are government programs and max-spending even with insurance.....<br /><em>Currently, Liz does not have a diagnosis that is covered by Medical or CCS. SUPER frustrating that she doesn't qualify for these health coverage programs.<br />We have private insurance but we pay towards every out of network physician that is billed (this includes radiologists, pathologists and anesthesiologists that are on service at the time Liz requires care; we don't get to choose these physicians. Co-pays for each office visit are $45.00 and her monthly prescriptions cost about $300. Those two costs alone add up.</em><br />
<em></em><br />
Does Liz see someone to talk to about her feelings?<br /><em>Yes. Liz has had a therapist for three years. Some months she goes once a week and others not at all. I recognized early on that she needed someone to talk things out with if she would like. It was a proactive choice on my part that I'm so happy I made, especially now that things have gotten so bad.<br /></em><br />
<em></em><br />
<em></em><br />
<em></em><br />
<em></em><br />
<em><br /></em>Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-69941904511214763032013-01-08T20:31:00.001-08:002013-01-08T20:31:25.279-08:00You Are My Race<br />
<a href="http://www.youtube.com/watch?v=OTg1n95--KE">http://www.youtube.com/watch?v=OTg1n95--KE</a><br />
<br />
{<strong>There is a favorite children's book of mine called <em>You Are My I Love You </em>(many of you have received the book from me as a baby shower gift) and currently lines from the book are making their way around Pinterest and facebook. Seriously, the beautiful words in the story get me every time I read it to one of the kids.</strong><br />
<strong>Two of the lines in the book have touched me in a new way over the last few years as they make me think of the journey Liz is on....</strong><strong><em>I am your finish line, you are my race. <br />I am your way home, you are my new path.<br /></em>I have said more times than I can remember and I have heard other mamas echo the same, that this feels like a marathon we are running with our sick children. It is exhausting and difficult and I wish we knew where the finish line was. I'm starting to understand that there may be no finish line for Liz medically. She is always going to have to deal with her health and this marathon is going to be a lifetime race.<br />What I can do as her mom is be her finish line, so to speak. I can cheer her on. I can advocate for her and rally for her so that there are mile markers she can see and accomplish and overcome along the way. When she gets too tired, I can pick her up and carry her until she is ready to run again. I can open my arms and wave her in and towards her finish line- whatever that may be. <br />We never would have chosen this path, but I will help her find her way. }<br /></strong><br />The last week has been difficult for Liz. Since my last update, she did end up starting on an oral antibiotic as her Staph just wasn't healing and her sinus infection had gotten pretty bad. We are now just praying that she stays clear of CDifficile infection as a result.<br />In the past week she has had two clean-outs due to impaction. It is just this never-ending cycle of impaction, dehydration, soiling, not eating, and back around again.<br />
Her stoma (GTube site) still isn't looking good or healing the way we'd hoped. She had an upper GI last Friday that showed the tube is placed well in her stomach which is good news. Her surgeon is thinking we may have to change to a new kind of tube, but I would hate to do that as right now she has a low-profile tube which means she has a little "button" sticking out of her belly and I hook her to the tube during her feeds. The new kind of tube would be a tube hanging out of her all of the time. Not ideal. The GI doctor and the amazing GI nurse clinician at the hospital are working to see how we can get her into see the inpatient wound care nursing team, as they know tricks and have supplies that even most docs don't. <br />She has declined in terms of her colon over the last couple weeks. We have started a new plan of weekly clean-outs and enemas in addition to her meds, but two of her doctors have asked me to seriously consider surgery to do a Cecostomy and Appendicostomy. I cannot even go there right now.<br />Today I took her to see her pediatrician because she has been short of breath over the last few days....alright, more like I noticed it about 5 days ago. She has been saying that she feels dizzy at times, but that is not a new thing and is usually caused by dehydration. The shortness of breath is new though and it has gotten worse, so I took her in..... she has partially collapsed lungs. This has been caused by the stomach pain she has been having and being so full of stool has caused her not to breathe deeply enough to really get air through. She is in no distress and she has no wheezing or chest pain other than when she blows out or takes a deep breath. She is using the spirometer every hour to move those lungs and we are doing breathing treatments every four hours to try and prevent pneumonia (she has a bit of a drip and congestion now and she has had pnemonia before and is susceptible). She'll be re-evaluated on Thursday. I am sure it will be better by then.<br />There has been discussion about her next bone marrow aspiration. GI said she should be ready in the Spring to have it done, but her Pediatrician wants to wait until the summer. We want to make sure that if her improved nutritional status is going to help her marrow we give it enough time to work and prove itself rather than testing too early and thinking it hasn't helped in marrow recovery.<br />Next week she will see a Genetics and Mitochondrial specialist for the first time at the request of a few of her doctors. Honestly, I am too covered in poop (figuratively, but literally too) to give much thought to that appointment or the reasons we are being sent there. I will deal with it on that day.<br />School.... is up in the air. I need to decide what to do about it. She missed the week before the two week Christmas break and she isn't going back this week. We just need to decide what will be best. For now, she is my shadow again.<br /><br />Thank you to those who continue to pray for her and support us on this race. I hope you know how much we appreciate you.<br /><br /><br />Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-91493762782047392322012-12-17T21:48:00.003-08:002012-12-17T21:51:57.923-08:00Dear Elizabeth Claire....<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrGvmk7J9RkyXLmWv3fSo5pP68V9dkY7ic5KamVKC_HLR1ar22kfjTJD0R6A7re1JV40gZ_7skKk9GGlMjU52HGSzWApLwPt-bv72i702bYkUJUBdJohKqeNVFPWOYG84G2G78tpog67E/s1600/liz.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrGvmk7J9RkyXLmWv3fSo5pP68V9dkY7ic5KamVKC_HLR1ar22kfjTJD0R6A7re1JV40gZ_7skKk9GGlMjU52HGSzWApLwPt-bv72i702bYkUJUBdJohKqeNVFPWOYG84G2G78tpog67E/s1600/liz.jpg" /></a></div>
<br />
<a href="http://www.youtube.com/watch?v=7UpfatdyFtY&feature=related">http://www.youtube.com/watch?v=7UpfatdyFtY&feature=related</a><br />
<br />
Elizabeth Claire,<br />
I know you are sick of being sick. I know I can't feel the exact pain and sickness you feel, but as your mommy, trust me baby, I feel your suffering in ways only you will understand once you have a child of your own.<br />
Every pain, every needle, every excruciating procedure, every minute of lost modesty or embarrassment, every time you feel scared or angry or lost- I feel it as an ache only a mother's heart knows. <br />
And I also understand your frustration, discouragement and even your thoughts of envy. I have felt those same things on your behalf and in my own mind over the last years. <br />
So my Lulu, this letter is for you to remind you of the things we have gained as a result of pain and suffering; your pain alone, and the pain I have had as your mommy as I have watched you take on your trails.....<br />
<br />
If you were healthy, you may take the ways your body is strong for granted.<br />
If you and I didn't spend so much alone time together, we wouldn't talk as much as we do.<br />
If we weren't stuck in the hospital room as much as we are, we wouldn't have as many of our own silly jokes or secrets.<br />
If we never had to wait (and wait and wait) for doctors or recovery, we wouldn't be practicing so much patience.<br />
If you weren't sick, you wouldn't have helped put something back together without even knowing it was broken ( a story I will share with you when you are older).<br />
If you weren't sick, I wouldn't be as strong as I am or as good of a mommy as I am to you and your brother and sister. You have given me that gift.<br />
If you didn't have to fight through pain the way you do, you would not be nearly as compassionate towards others as you are.<br />
If you weren't suffering, many of us may not be reminded of humility, endurance, grace and patience as often as we are because of what we see in you.<br />
If you weren't sometimes too tired or sick to do things, you may take for granted the days you are strong and doing fun things.<br />
If you weren't sick, there would be so many less prayers and less people talking to God. <br />
If you weren't a little hero, we wouldn't have been as touched by the lives of your hero friends, and goodness, can you imagine life without having those friends?<br />
If you didn't have to practice mind-over-matter or have to be brave so often you may not be as strong as you are now.<br />
If I didn't watch you endure so much for so long, I wouldn't appreciate much of what I do, in the ways I do- soaking in the happiness you, Kate and Jack bring. Breathing in the yummy way you smell after a shower, just as I did when you were a newborn. Closing my eyes to take in all of your giggles and the sound of your voices singing. Committing the happiest days to memory knowing they will get us through the next trial and bring us smiles again. <br />
If you didn't have to suffer my sweet girl, we may not recognize that life is hard, but it is also so wonderful in even small ways.<br />
<br />
These are a lot of "ifs", I know. There are many other ifs or whys that we could list that have nothing to do with your suffering. Everyone has a list and is fine to question things and even be sad about some of them. <br />
I want you to remember that even though life can feel so unfair and even as if God has forgotten to protect you or answer you at times, many of our "if's" have awesome answers and there is always something to be grateful for.<br />
I love you Elizabeth Claire. If only you could grasp how much and how proud I am to be your mom.<br />
<br />Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-28603652481606430102012-12-17T18:59:00.003-08:002012-12-17T20:44:40.554-08:00Finally, an UpdateIt has been a long time since my last post. Though I have much to say, I will keep this blog entry to the point and factual as it is prayer for health that I would like most right now.<br />
I last wrote when Liz was in-patient at CHLA for the colon manometry studies. We were a bit surprised when we learned that the tests revealed that her colon is not contracting much at all without the use of medication and enemas. We knew she had some issue going on, as her chronic impaction and other symptoms indicated, but her physician and Walter and I were surprised by the severity of her dysmotility. Unfortunately, the probes placed in the OR before the start of the day-long testing weren't able to be threaded to the right side of her colon or her cecum; frustrating at the time, but very disappointing now that we know how severe her dysmotility is. We need to know what her cecum and ascending colon is doing. The manometry studies will need to be repeated, perhaps in Cincinnati at the amazong colon/rectal/bowel center there.<br />
After the results Liz was put on a new regimen of meds and enemas, but they are not working in the way we'd all hoped. Unfortunately there are no other medications available to try and at this point we can only adjust meds and enema schedules and try to make sense of her poor colon. Surgery is the only other option. We meet with her motility specialist in Los Angeles in two weeks to talk about whether or not it is time to head to Cincinnati to see the specialists there.<br />
Due to the new findings, her Immunologist has also referred her to the genetics and mitochondrial specialist at CHLA for more studies. <br />
She has had ongoing issues with her stoma (the site/opening where her g-tube is placed) and after much pain, treatment by her GI and home nursing, she finally has started seeing a wound care specialist. Two weeks ago her stoma cultured positive for a Staph infection. Of course this sent everyone into a bit of a frenzy as the topical cream antibiotic she'd already been using wasn't clearing the infection and using an oral antibiotic is not an easy recommendation for Liz due to the recurrent CDifficile. Her infectious disease doctor got involved and after many calls between us all, we elected to give an additional topical treatment a try. Last week, her stoma was swabbed again and is culturing less Staph than a few weeks ago, so we are hopeful the medicated creams are working enough on their own. Thursday she will have the stoma cultured for a third time and we are praying the Staph is continuing to decrease.<br />
<br />
Liz has had some great days and has even had two weeks of attending school for the whole week! Admittedly, she is exhausted though and currently we are discussing with her doctors the option of pulling her from school for a couple of months during this flu season and in an effort to get better control of her colon (it is difficult to time enemas and hydration around a seven hour school day).<br />
You may remember that we elected to stop the immunoglobulin infussions (IVIG) in May and watch her body to see what it would do on its own, without the help of donor blood to boost her immune system. We knew that the winter and flu season would be telling in how her body would do without that support. I've been praying that was the right choice.<br />
<br />
Today I took her to the pediatrician because her cold-like symptoms are much worse and she has chest discomfort and a fever. Liz and I diagnosed her before we even saw the doctor, as we both know exactly what her sinus infections present like. She indeed does have a sinus infection and her chest pain and tight airways are due to possible bronchitis. Again, an oral antibiotic is not an easy go-to option for Elizabeth because of CDifficle. So, we are increasing her inhaled Azithromycin dosage and Dr L. is contacting Infectious Disease and GI before we begin an oral antibiotic. She is pretty uncomfortable tonight. <br />
Today Dr. L and I talked again about pulling Liz from school and we have decided that we will have her labs drawn on January 4th to evaluate her white count and neutrophil count and then based on those labs decide when/if she can return to school. Infection requiring antibiotics is just such a scary thought for us because of the darn CDiff issue. <br />
Speaking of CDiff, we are nearing a year of her being CDiff free! This is huge and such a praise as that last 9 month-long infection was such a blow to her body. Liz smiled today and told Dr. L and me that she needs a sign that reads "One year CDiff free and I didn't need my sister's poop!" (remember, a fecal transplant was on the table and in the works, with Kate being the donor) : )<br />
<br />
Of course the last 2+ months since I've written have brought much more to blog, but tonight these are the facts.... these are the issues our girl needs prayers for. <br />
<br />
If you are still thinking of her and praying, thank you.Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-21434800332887919642012-10-24T04:37:00.004-07:002012-10-24T04:37:53.956-07:00Short update-
Elizabeth is scheduled to go to the OR procedure room
at 6:15ish this morning. After a cleanout at home Sunday-
Monday, the team thought she needed an additional aggressive cleanout
begining last night. She's had Golightly running all night and multiple enemas but hasn't had much result. I'm praying they don't reschedule her
procedure due to this.
Anesthesia should be straight forward as usual. Liz will be very uncomfortable
and in pain throught the day as she wakes with the tubes in and
endures the cramping during the 12 hour tests.
Please pray for her.
Thank you.Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-58138231413982413762012-10-21T22:53:00.000-07:002012-10-21T22:58:53.539-07:00Please Pray<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBzaWDilId8kHfl67U58R_O6HuknUcT5VzSvSMa2fW2A0tuvBCMn2brG8mo8uA_IdqMUhQwZ1nY3GWaknPdpG_bCtxeyW3ZLPYzcp4Ut0fYTGBmNMcPzZ1PsCknz-K0TW6SPfv6yquZYU/s1600/074.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBzaWDilId8kHfl67U58R_O6HuknUcT5VzSvSMa2fW2A0tuvBCMn2brG8mo8uA_IdqMUhQwZ1nY3GWaknPdpG_bCtxeyW3ZLPYzcp4Ut0fYTGBmNMcPzZ1PsCknz-K0TW6SPfv6yquZYU/s320/074.JPG" width="240" /></a></div>
<br />
<br />
<br />
<br />
<br />
For my Elizabeth Claire-<br />
<a href="http://www.youtube.com/watch?v=7UpfatdyFtY&feature=related">http://www.youtube.com/watch?v=7UpfatdyFtY&feature=related</a><br />
(click and it will play in a separate window. you will be able to read blog during play)<br />
<br />
My girl needs prayers this week. I<em> covet</em> prayer. I ask you mom to mom, friend to friend, please<br />
flood His ears with your prayers. Elizabeth has gone through more than any person should ever have to endure. For years she has tolerated pain and suffering; for years she has kept on even though she has declined in may ways rather than healing. It feels as though she has no physical reward for all of her heroic ways she has endured in the hope that she would get well. How can one go on and continue to go through pain in the hopes that they will be made well? <br />
I struggle with that thought <em>every</em> time I sign each consent form, every time I hand her over to the OR team and each time I allow her to be put through pain. It is a guilt no mother should have to feel and a trust no child should ever know. <br />
Tomorrow Liz will begin another clean out at home in preparation for her hospital admission. Last weeks clean out was terrible with pain and retching. Also tomorrow, she will be seen by GI here in Long Beach because her gtube site has gotten even worse. She is now bleeding enough that she has blood coming out of the actual tube. I am a bit relieved that in the hospital this week we'll be able to have constant care and I am going to ask for the wound team to be in on helping her with the stoma.<br />
On Tuesday she will be admitted to CHLA very early in the morning for more preparation and for IV fluids as she cannot take in anything other than clear liquids for the next few days. Wednesday she will go to the OR procedure room and have probes and catheters placed rectally and down through her nose/mouth. She'll be sedated during placement, but will wake with the tubes in and they will remain for a full day. On Thursday, she will have additional probes placed.This manometry testing is not fun. It will be painful and extremely uncomfortable as they make her colon contract over and over throughout the day for the study. Her GI team has held off on this testing for a year because it is awful and they wanted to spare her if at all possible. <br />
Please pray for Elizabeth's tolerance. She will be in a hospital that is unfamiliar and she will be without the nurses we have come to trust and who care deeply for Liz personally. Also, other than the motility specialist who she has only met three times (and who lacks a great bedside manner), Liz will be without her team of doctors as CHLA is not our home hospital, and while we have met with specialists there before, she will not have her core team there.<br />
Pray for Liz to not have unbearable pain and for nausea to be well managed. Pray that the doctors get the information they need and that the end result of this week of pain will be "worth" it.<br />
Pray that her counts are stable- red and white cells, and platelets. <br />
Pray for Jackson and Kate, too. I will not be able to see them because CHLA is not close to home. They both are already upset that I am leaving. Kate is sick with a horrible cold and I am praying that she is better by Tuesday and that Jackson stays healthy. It is awful to feel torn and want to be with my children when I cannot. Walter will be off of work for five days to help and will go back and forth from the hospital.<br />
<br />
<br />
<em>Thank you</em> for praying. Ask others to pray. <em>Know that I am grateful</em>.<br />
<br />
{Lord, I do not doubt you, but please, please help my Elizabeth and finally bring some healing. Please see how you have used her and touched lives through her, and please bring an end to her suffering}<br />
<br />
<br />
<em>The Lord has promised good to me<br />His word my hope secures.<br />He will my shield and portion be</em><br />
<em>as long as life endures.</em>Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-74651993254740710032012-10-16T16:24:00.000-07:002012-10-16T16:24:06.695-07:00A Bushel and a Peck.... I grew up going to Oak Glen to enjoy a Fall day of apple picking. How fun to continue the tradition with my own family. On Saturday, my birthday, we headed up to the apples. Liz was supposed to begin a bowel clean out, but we held off a day because I had my mind set on a family day in the beautiful weather and nothing was going to stop us. We had the <em>best</em> day!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7iHGb8l_j14dOel54eHFQC_S8NMSJDTM2dCUqG_qogNheMXJDTeyGA2gfVZ_5LNoRAXvBYr1-9105k5_35RxXuA2U4zIOi4w8-l3rm9VHjcJXTNmlNRNjXfx5r66hcu_c3obemdOaxH8/s1600/005.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7iHGb8l_j14dOel54eHFQC_S8NMSJDTM2dCUqG_qogNheMXJDTeyGA2gfVZ_5LNoRAXvBYr1-9105k5_35RxXuA2U4zIOi4w8-l3rm9VHjcJXTNmlNRNjXfx5r66hcu_c3obemdOaxH8/s320/005.JPG" width="262" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First stop was to pick pumpkins....</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ_qAX-NCMT6mx2Wmbq-4WwC_6D1zdc7tO-Yo8trp104b5T8pFlX_yUXOx7GX_OoVLzwO36jXrXuaH3YJUhPKfAHi9st4VQEaXd5BMs2ZQcSPFYvNehpIT3QI88hUT_oMyZxf3dNMnY6I/s1600/001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ_qAX-NCMT6mx2Wmbq-4WwC_6D1zdc7tO-Yo8trp104b5T8pFlX_yUXOx7GX_OoVLzwO36jXrXuaH3YJUhPKfAHi9st4VQEaXd5BMs2ZQcSPFYvNehpIT3QI88hUT_oMyZxf3dNMnY6I/s320/001.JPG" width="204" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLG9exON9HsZeXFyPyBlV8i5Vy31s1poSepFspmjPNbEw-3XVlefEPixdXcoDJgZEz_e7cyH1Yv0-f_GJpRQPVRgLITb6IhJQtuWOkOg-K9MWV6Fm5yswuv5o3F1JxmNyMLNkOotjNQ_8/s1600/004.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLG9exON9HsZeXFyPyBlV8i5Vy31s1poSepFspmjPNbEw-3XVlefEPixdXcoDJgZEz_e7cyH1Yv0-f_GJpRQPVRgLITb6IhJQtuWOkOg-K9MWV6Fm5yswuv5o3F1JxmNyMLNkOotjNQ_8/s320/004.JPG" width="213" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNVxqXqLUL8j2YqDml6z-6x5w5sBTlYWtz517-XWQy7bilLuAyMWqBrX3ggzoPJYOscIxQ7-iaY7ySW7XXV49Cgrtaq_Sj7fHbbiEqaejyg0pNgGXNgY0e-UGoCJ3W62yWJxz06Cr4lfA/s1600/002.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNVxqXqLUL8j2YqDml6z-6x5w5sBTlYWtz517-XWQy7bilLuAyMWqBrX3ggzoPJYOscIxQ7-iaY7ySW7XXV49Cgrtaq_Sj7fHbbiEqaejyg0pNgGXNgY0e-UGoCJ3W62yWJxz06Cr4lfA/s320/002.JPG" width="162" /></a></div>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfGjr5El2TCyYCRBd_vR59d4j93YKOo0ckUWZODN83-EoSZn7oTYmlDm2Yg0p44GzwD16plELxkeYnVGLKuOnSMgQJDdvpprAgimvF95fDpeJs1mKkrZOalQnI__FPFi05EeQLg22U6UU/s1600/006.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfGjr5El2TCyYCRBd_vR59d4j93YKOo0ckUWZODN83-EoSZn7oTYmlDm2Yg0p44GzwD16plELxkeYnVGLKuOnSMgQJDdvpprAgimvF95fDpeJs1mKkrZOalQnI__FPFi05EeQLg22U6UU/s320/006.JPG" width="269" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love them a bushel and a peck.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQcelFma4iZJpPzB81EaJNfR_MNESUVFOrAFgHMm2oCiEps9tSiad23QF1Vz9acnpKmetufK_YJ0CnaK7XmH_jrAFv9EPcijiYyhLKPxe0xHM8bHozJzUhiEYFhkmduwVM4Ur7JR6-xI0/s1600/010.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQcelFma4iZJpPzB81EaJNfR_MNESUVFOrAFgHMm2oCiEps9tSiad23QF1Vz9acnpKmetufK_YJ0CnaK7XmH_jrAFv9EPcijiYyhLKPxe0xHM8bHozJzUhiEYFhkmduwVM4Ur7JR6-xI0/s320/010.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"> </td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB-lGnUjHce1zCgLogh4PL0hshqtgBGVsBa8wD_-u-XnYxjDptHBVRO4mBTqg_OXM_r2rvloP-Jyj-3TtoPhw4KIZm5lq2XxGNSZ3-DLUCCxHTX9jll3emq5D5eLtNA-Jbx-PR_jj_ZLk/s1600/014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB-lGnUjHce1zCgLogh4PL0hshqtgBGVsBa8wD_-u-XnYxjDptHBVRO4mBTqg_OXM_r2rvloP-Jyj-3TtoPhw4KIZm5lq2XxGNSZ3-DLUCCxHTX9jll3emq5D5eLtNA-Jbx-PR_jj_ZLk/s320/014.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fitting because it IS true that Jackson has a big pumpkin head : )</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiIs5-AYEDHl0nTsp1gxXPVjW7rh0r6WXQlPv5sgep0stcER7Rn4SYJJNPg-65CkzueR4UlBDwLGKwcOYOQRCNCueKckgRKeShjHAuFg6fP-SI2XTHx06pobmCtLcCESY_umQ7RC1c_uQ/s1600/015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="195" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiIs5-AYEDHl0nTsp1gxXPVjW7rh0r6WXQlPv5sgep0stcER7Rn4SYJJNPg-65CkzueR4UlBDwLGKwcOYOQRCNCueKckgRKeShjHAuFg6fP-SI2XTHx06pobmCtLcCESY_umQ7RC1c_uQ/s320/015.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tractor ride up the hill.....</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4TG53CqAsFua10Jy9Si-R9GyIj1WCjNUaKZv-60c3un59WPdH-EJ4S7-XJu154iB4TmiT2Y_Mizdd1QMCTHfMwJYIKe7SMQVZwSKZrPaFRLAXNj6A56xbWNU7Xo8hyFECf7iZG0Fj9WM/s1600/018.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4TG53CqAsFua10Jy9Si-R9GyIj1WCjNUaKZv-60c3un59WPdH-EJ4S7-XJu154iB4TmiT2Y_Mizdd1QMCTHfMwJYIKe7SMQVZwSKZrPaFRLAXNj6A56xbWNU7Xo8hyFECf7iZG0Fj9WM/s320/018.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">....and a beautiful view. Thank you God for eyes to see.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV99gF_WTfxHuE7czluwZKwmxv4oj3GeBMUwBtaYLOSnrHpdxUZB6Bo54OSfL9mr16cl2kbyKJ5E3hKPeZG5LEI4B5y-d-Ra17djLo50K5qdaftSR3W4HEqh2Lmt5lqinPJjwNWhf77aQ/s1600/019.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV99gF_WTfxHuE7czluwZKwmxv4oj3GeBMUwBtaYLOSnrHpdxUZB6Bo54OSfL9mr16cl2kbyKJ5E3hKPeZG5LEI4B5y-d-Ra17djLo50K5qdaftSR3W4HEqh2Lmt5lqinPJjwNWhf77aQ/s320/019.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I would not let them start picking apples unless I was able to take their picture.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4kty1ubiYc9cDglHob1_WnTRcqlsXupq7f-18oP9FMMGro22Ze8miD5QHxy4BAXDrR8Gfc4F1HFq4WEWOhB2tq1ZDsYzc9ZePVS9Svxr0V95PxpukZ3-m5oeArgiZDTjwr-N4PqIIoPg/s1600/020.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4kty1ubiYc9cDglHob1_WnTRcqlsXupq7f-18oP9FMMGro22Ze8miD5QHxy4BAXDrR8Gfc4F1HFq4WEWOhB2tq1ZDsYzc9ZePVS9Svxr0V95PxpukZ3-m5oeArgiZDTjwr-N4PqIIoPg/s320/020.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Going up. </td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVOIBtWngZQ0Bb21aS0peXUORmmq7GJsJN9xA2BZqNDl9MtEpcYeYtMGHF0StZn4wPZ_YX0ELdNFWaqgPmVa784UD_HhsjY-QkcypcnZLB07KRy8p7mrugudNKpOmyXLz1AqaAEK7IXlc/s1600/021.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVOIBtWngZQ0Bb21aS0peXUORmmq7GJsJN9xA2BZqNDl9MtEpcYeYtMGHF0StZn4wPZ_YX0ELdNFWaqgPmVa784UD_HhsjY-QkcypcnZLB07KRy8p7mrugudNKpOmyXLz1AqaAEK7IXlc/s320/021.JPG" width="191" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jackson was searching for yellow apples on the Red Delicious tree</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Lzl4wmJhtfnHNAXBTlRotb7tqgq0z5NERUeHbr6oVk6su4pyGu1q9pJieQsvqs2ty4wbplJLZOenAE0RcZPvk0So0ipw5KVb1Fqy0UpJ-U5cukbvZqLWB0nZ8GPtKGvTHLUvkaSLNqE/s1600/025.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9Lzl4wmJhtfnHNAXBTlRotb7tqgq0z5NERUeHbr6oVk6su4pyGu1q9pJieQsvqs2ty4wbplJLZOenAE0RcZPvk0So0ipw5KVb1Fqy0UpJ-U5cukbvZqLWB0nZ8GPtKGvTHLUvkaSLNqE/s320/025.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I could not have been more happy on my birthday.</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5TkcXSr3TFURbOYReVJGYoqHWL8Y7k4YHx6Jr-JDVIYXuMI_ba-5oDfsyZ7bPEgc5G0uml5x3Emafyexte-shlbT9q-PQdIW9k7CXQAwanqBHEl3B85HhYS5oacdUJXfJH1F4WgMvsIM/s1600/027.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5TkcXSr3TFURbOYReVJGYoqHWL8Y7k4YHx6Jr-JDVIYXuMI_ba-5oDfsyZ7bPEgc5G0uml5x3Emafyexte-shlbT9q-PQdIW9k7CXQAwanqBHEl3B85HhYS5oacdUJXfJH1F4WgMvsIM/s320/027.JPG" width="213" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxrxDxYhIMG221tKjlrvaKJts3V6AY4Lh-CrcDuXrLARfIdVe9OZwDvvVBE24cw0SSsl2tzj0-CtsK7U_iYXWp9aevbz41eT4qXhBjMXuoH0NUFwwbgYsPBd623mRZ6SirVD7SMBjoiAY/s1600/028.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxrxDxYhIMG221tKjlrvaKJts3V6AY4Lh-CrcDuXrLARfIdVe9OZwDvvVBE24cw0SSsl2tzj0-CtsK7U_iYXWp9aevbz41eT4qXhBjMXuoH0NUFwwbgYsPBd623mRZ6SirVD7SMBjoiAY/s320/028.JPG" width="213" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwpOVpx2XYsl8Qnbn08rYMQ5oP4tG64RKc3lpB38ANFFGYv5f9jJasbbYvajew8UAMJWJy2dn0la9962HLOKlPCaUGr6YuzVlNqU5JB6khVgvjoRIS-9sRfbCfFQScBeEgROeTmdWmcVQ/s1600/029.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwpOVpx2XYsl8Qnbn08rYMQ5oP4tG64RKc3lpB38ANFFGYv5f9jJasbbYvajew8UAMJWJy2dn0la9962HLOKlPCaUGr6YuzVlNqU5JB6khVgvjoRIS-9sRfbCfFQScBeEgROeTmdWmcVQ/s320/029.JPG" width="213" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_LpW0sCctnc-09zzXTJ3n3e-Tt3ATC4j2DkJxVaYJvsFd11Ra8rJfbqan_txGltoL9uRwKrem2lJlGUrW4fAVGwvRNqmhESvV6O0VAtQcltUP8N3MWwIZ_0TE-T_kNoZJfV46I5Uk_dY/s1600/030.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_LpW0sCctnc-09zzXTJ3n3e-Tt3ATC4j2DkJxVaYJvsFd11Ra8rJfbqan_txGltoL9uRwKrem2lJlGUrW4fAVGwvRNqmhESvV6O0VAtQcltUP8N3MWwIZ_0TE-T_kNoZJfV46I5Uk_dY/s320/030.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of my most favorites ever of Kate.</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5Xkh-hA6L6RcyKMtDqNrtEfiBz7HtqgsfkwUJIGu41uRBrikbk61Ai4kkYJTA_2SWAbljxb8hmvqACN_XH9k4gFzEZ2XgNrkpRX57GbCmBZk8wsZKfF7nh4La7q6bczoN35kERCGL5mE/s1600/032.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5Xkh-hA6L6RcyKMtDqNrtEfiBz7HtqgsfkwUJIGu41uRBrikbk61Ai4kkYJTA_2SWAbljxb8hmvqACN_XH9k4gFzEZ2XgNrkpRX57GbCmBZk8wsZKfF7nh4La7q6bczoN35kERCGL5mE/s320/032.JPG" width="212" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVBILIs_a4zOyioa9iAGDB-AR7R0ABdky9AqVd1hoN2O-aYL19HRZTIXmAnwaG2-v9bKKxFGz45-qn_4b11TW8ukTB_x5kspfH-jQUaqBtA_MOv2BhvCaz7L_SBkTRTMdzBxFj4h7yAos/s1600/033.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVBILIs_a4zOyioa9iAGDB-AR7R0ABdky9AqVd1hoN2O-aYL19HRZTIXmAnwaG2-v9bKKxFGz45-qn_4b11TW8ukTB_x5kspfH-jQUaqBtA_MOv2BhvCaz7L_SBkTRTMdzBxFj4h7yAos/s320/033.JPG" width="213" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV0iiPETzzEnKaGyODyo99IKFjFT7uJ2l8q-i05Mgqib2bvqAp-fM0F6xN_drdAeha5JAjYWUkCFT5_ayInR7lg-O90lmdQGYeTiSOOrHVtxC4JTrXbhC6udEN6w3AE_c4PMfzueiS1n4/s1600/034.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV0iiPETzzEnKaGyODyo99IKFjFT7uJ2l8q-i05Mgqib2bvqAp-fM0F6xN_drdAeha5JAjYWUkCFT5_ayInR7lg-O90lmdQGYeTiSOOrHVtxC4JTrXbhC6udEN6w3AE_c4PMfzueiS1n4/s320/034.JPG" width="200" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU7s1HKZ0gW6zT9fuPH_30OXGVrzlzhCPu1w966MvF5ZanExCV-ANihHJ5umynyVdPajOTXXiWbLCPHqu-BdrkS-3nYf77D25suqgQm2-5qm70wrTY_mZfIQ3Qy1ytzYEBZhRfN3SSL3w/s1600/037.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU7s1HKZ0gW6zT9fuPH_30OXGVrzlzhCPu1w966MvF5ZanExCV-ANihHJ5umynyVdPajOTXXiWbLCPHqu-BdrkS-3nYf77D25suqgQm2-5qm70wrTY_mZfIQ3Qy1ytzYEBZhRfN3SSL3w/s320/037.JPG" width="213" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgudZ2jjS_r8VhvVQjN046jK_32M2CdljwntajZaPVZTyG-EbhdzMagjixM9OGgs_LUD9WXWDxIIb4p7b8m6cXMCsPulw4ydJKh-g4vc8zmyZrpolO38EMonm631ISeAe8H09ooEUNEheM/s1600/038.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgudZ2jjS_r8VhvVQjN046jK_32M2CdljwntajZaPVZTyG-EbhdzMagjixM9OGgs_LUD9WXWDxIIb4p7b8m6cXMCsPulw4ydJKh-g4vc8zmyZrpolO38EMonm631ISeAe8H09ooEUNEheM/s320/038.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Isn't she beautiful?</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_5VrYJp90gzN_ydMm0ACZm6JQUBhC7O2x-hmCvwyZNWGme-fGAoAq4yNTY9_zMW50qC-Pq8t_LMyvJf27tWwepriwVC-jgyJ12KH9UvUMXIZSQzMTOMrkDJTSfl9liiiiGJ5v9r5KAPk/s1600/042.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_5VrYJp90gzN_ydMm0ACZm6JQUBhC7O2x-hmCvwyZNWGme-fGAoAq4yNTY9_zMW50qC-Pq8t_LMyvJf27tWwepriwVC-jgyJ12KH9UvUMXIZSQzMTOMrkDJTSfl9liiiiGJ5v9r5KAPk/s320/042.JPG" width="320" /></a></div>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOCX6DJfDOfoYJ30xOAUyrawhMpG4ZePQOMLhBPUj_g9PeUBy8QzyDwBmHGD_c1K7IkPSFeMC_Enu3KQu3PZHLFiLJ34CuT9a_IETVIgGG4JWEPZUGQlEmSuSKbQ3vwv8SyBmj_Joc2XI/s1600/047.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOCX6DJfDOfoYJ30xOAUyrawhMpG4ZePQOMLhBPUj_g9PeUBy8QzyDwBmHGD_c1K7IkPSFeMC_Enu3KQu3PZHLFiLJ34CuT9a_IETVIgGG4JWEPZUGQlEmSuSKbQ3vwv8SyBmj_Joc2XI/s320/047.JPG" width="167" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The tree(s) behind the girls was a set of twins. It was one tree that split in two. <br />Thanks for duplicating, silly girls!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikPUj2gav75E-ijws1si-IRc2zAgBQTyX5Y2dKqILjhP9lkYXELzUUHOeZk6Y8LAaZexNUErvMkEdM5Ht_BO5rEZ2LrCEsAc5LaodBIMVhB7wSchyGbf-syBeGOSdSq8wcOHu-K_642E4/s1600/049.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikPUj2gav75E-ijws1si-IRc2zAgBQTyX5Y2dKqILjhP9lkYXELzUUHOeZk6Y8LAaZexNUErvMkEdM5Ht_BO5rEZ2LrCEsAc5LaodBIMVhB7wSchyGbf-syBeGOSdSq8wcOHu-K_642E4/s320/049.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yay, a corn maze! Which way to go?</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3AK_RG9XqqMjUSHyr9BDRz4WSAp3ogfsCbXU3tRebZ5_hkxyGaGJN8qj80rmbaF7BUpr5gKTp6XJNu6zct-0XFjF_hNQxitMS7D_ZHkFYPplCmgBS424gZOLsxgCcYKv5JTOvNYxmgcI/s1600/050.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3AK_RG9XqqMjUSHyr9BDRz4WSAp3ogfsCbXU3tRebZ5_hkxyGaGJN8qj80rmbaF7BUpr5gKTp6XJNu6zct-0XFjF_hNQxitMS7D_ZHkFYPplCmgBS424gZOLsxgCcYKv5JTOvNYxmgcI/s320/050.JPG" width="203" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We decided to split up</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4JXyf29hlwjfB39uW0yN8zoTwqbICg57KOWqiW0FMPPItVHZR6C2Yg45gZm4aJS0oslX7QUa2k2SzReMj4mvAtAsFWty6nkwFQXaMg492aUvot5Yhwz1aHYTTaEPETij0JqNy6w316rY/s1600/052.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4JXyf29hlwjfB39uW0yN8zoTwqbICg57KOWqiW0FMPPItVHZR6C2Yg45gZm4aJS0oslX7QUa2k2SzReMj4mvAtAsFWty6nkwFQXaMg492aUvot5Yhwz1aHYTTaEPETij0JqNy6w316rY/s320/052.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I see you, mu Lulu</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiZhsAqepZTBOWy1DsEf_kGwLWH3ZmOx6nifsDqvMMY5Dqa-E-8DrzzWGmWpk8e0R58CIfX-h1WS6Vn87ZHIzdoHRmZXQVMMBfpAEyUpP5VTp64ck5MxKizWt5bUo2kE76ETmlyr_UKgk/s1600/053.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="218" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiZhsAqepZTBOWy1DsEf_kGwLWH3ZmOx6nifsDqvMMY5Dqa-E-8DrzzWGmWpk8e0R58CIfX-h1WS6Vn87ZHIzdoHRmZXQVMMBfpAEyUpP5VTp64ck5MxKizWt5bUo2kE76ETmlyr_UKgk/s320/053.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Choosing apples....</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjThpPTRu7B9F41vFapKxswzIXFEWM4kaPO9IoQSAy_SgsysamrAjhl4duddu32Q9iChjdYtzzdPKul5y6rfGwI5iL2U1hPji69165mb09JGPVJ4x3Suq4x6wXd4nj0NPoXSUuQo5RHe3c/s1600/054.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjThpPTRu7B9F41vFapKxswzIXFEWM4kaPO9IoQSAy_SgsysamrAjhl4duddu32Q9iChjdYtzzdPKul5y6rfGwI5iL2U1hPji69165mb09JGPVJ4x3Suq4x6wXd4nj0NPoXSUuQo5RHe3c/s320/054.JPG" width="284" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">....for pressing. Let's make some cider, y'all!</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE2QytZvJyN9-jpkX0nNk8FxEI_g8iNpjA-DA2mduvm8Ls3GpwuvNjAkteEqYj81JTqDNgUbuE4zgO-rUjXa2kw_qtsueSAE5NR-7qFfXMl_EFIsl8cDLibsBlZ08cpzK_povTnd8zONo/s1600/057.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE2QytZvJyN9-jpkX0nNk8FxEI_g8iNpjA-DA2mduvm8Ls3GpwuvNjAkteEqYj81JTqDNgUbuE4zgO-rUjXa2kw_qtsueSAE5NR-7qFfXMl_EFIsl8cDLibsBlZ08cpzK_povTnd8zONo/s320/057.JPG" width="233" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQpnctW8CwdATY23cyA9lezTALWdR5jc7-UenhY361ffcRE9aJG9WMG-p5h-b2dH43uNnfe1EYLPhpFIuMUqZfJD5wFoa_n1O0tI7B_Yuhv_O5nOUaa8-YcwcSuJWvziT-iDzrlepZ0Qk/s1600/059.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQpnctW8CwdATY23cyA9lezTALWdR5jc7-UenhY361ffcRE9aJG9WMG-p5h-b2dH43uNnfe1EYLPhpFIuMUqZfJD5wFoa_n1O0tI7B_Yuhv_O5nOUaa8-YcwcSuJWvziT-iDzrlepZ0Qk/s320/059.JPG" width="320" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY0Q6-Te9A3vFudJxQyo_zWiV1ROvIbpz_vJ3z6slj_XZGnp2BY0CJ08fhmzw0DrZVAaQpzZoyAmaUosfM7lw8DfvOD2oXoHS9GLR_M1xTPSCZL1JgR56ZEtZJ6rjaGBY5Mg01Uy6niy8/s1600/061.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY0Q6-Te9A3vFudJxQyo_zWiV1ROvIbpz_vJ3z6slj_XZGnp2BY0CJ08fhmzw0DrZVAaQpzZoyAmaUosfM7lw8DfvOD2oXoHS9GLR_M1xTPSCZL1JgR56ZEtZJ6rjaGBY5Mg01Uy6niy8/s320/061.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We brought in our muscle girl when it got super tough</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBgBLNvQFkpG5uyAx549krjUcyuPSRv0UbfSIGv10UlH9ZK8Zcvnr-Mjz1oVu7bEIlcxK0_Ywh5EX6byl8IMKWVlqx7fQXkzE9N2gTdgJ5QO7BpH_jj-Jj8vaOe9UZzhyTyi5TPmgJxWs/s1600/064.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBgBLNvQFkpG5uyAx549krjUcyuPSRv0UbfSIGv10UlH9ZK8Zcvnr-Mjz1oVu7bEIlcxK0_Ywh5EX6byl8IMKWVlqx7fQXkzE9N2gTdgJ5QO7BpH_jj-Jj8vaOe9UZzhyTyi5TPmgJxWs/s320/064.JPG" width="189" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It is filling up.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWU8g8iV3xLfkw7r22tlzFdcSjaoGaPtQlfk2Ve5J0J0TTyJyjuaUeYNZHs325J3OGe6uGUOmVZ3asJE_o9QwdU5kP_KDme3ELKpgPTkWobeXfrPD53pn686UUbdwVruEq7yCEyd55pfs/s1600/065.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWU8g8iV3xLfkw7r22tlzFdcSjaoGaPtQlfk2Ve5J0J0TTyJyjuaUeYNZHs325J3OGe6uGUOmVZ3asJE_o9QwdU5kP_KDme3ELKpgPTkWobeXfrPD53pn686UUbdwVruEq7yCEyd55pfs/s320/065.JPG" width="195" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">They did it! Teamwork and some sibling arguing makes for great cider.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHGZwA8V5O1Ykocxzo8HlBvcVBSpG0z2j8Tf4ar-0FeVYFSuD0wTTbIumNKp5K7GGyCzJVy-QaTOQyZAizq-ApGUzcaMRE9LdfL1lDHxKqaOaQ92gkrW2hbI5BHKkrTaekg54BzLqIJeI/s1600/066.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHGZwA8V5O1Ykocxzo8HlBvcVBSpG0z2j8Tf4ar-0FeVYFSuD0wTTbIumNKp5K7GGyCzJVy-QaTOQyZAizq-ApGUzcaMRE9LdfL1lDHxKqaOaQ92gkrW2hbI5BHKkrTaekg54BzLqIJeI/s320/066.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kate caught this photo of Jack. After a long day, he was ready for home.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwbSQnmUcPDR-Z5lkPkd7V_UHF_mweWI0XdwewyOcIAKOpdK-5RtieQEHiD-K5YwBjjPl3_ViCgvE9Gb7atiavIPEdeOaNLErOvtcKisLDQxcG2yjvSDsYRvNldSdQTsXo9KRswzdc2hI/s1600/045.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwbSQnmUcPDR-Z5lkPkd7V_UHF_mweWI0XdwewyOcIAKOpdK-5RtieQEHiD-K5YwBjjPl3_ViCgvE9Gb7atiavIPEdeOaNLErOvtcKisLDQxcG2yjvSDsYRvNldSdQTsXo9KRswzdc2hI/s320/045.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Until next year, Oak Glen. <br />I will remember this year, this image, especially.</td></tr>
</tbody></table>
Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-15904642066979307382012-10-16T12:05:00.000-07:002012-10-16T12:46:59.608-07:00UpdateIt has been a month since my last post and some have messaged me to ask how things are. It would take many words to fill in on everything that has happened, so I'll post pictures and recap.<br />
We have been busy! Kate's volleyball and the kids' school schedule and homework would keep any family busy. Adding in Liz's appointments and many sleepless nights has made me exhausted and I just haven't had the time or motivation to blog.<br />
<br />
Jackson and Kate are doing very well! Jack is making new friends at school and soaking in learning. He was pretty bored in the first weeks of school, but now that his class has been divided into reading groups based on the student's reading level, he is happy to be challenged more. <br />
Kate is happy and my only worry for her is that she is too tired from having a lot on her plate. It is good for her to be busy though and for her to have her own "thing" to keep her distracted and motivated. Volleyball takes up two hours a night after school and middle school homework is intense, so she is falling into bed each night. She loves the sport and has committed to playing Club ball again, so we are hanging on for the ride of another season.<br />
<br />
Elizabeth has been struggling. Her Gtube site (called a stoma) has not healed as well as it should. She's been dealing with pain and bleeding along with granulomas. Rather than having to go into the doctor's office each week, I now have been given the supplies to treat her granulomas at home. She's started back on Prilosec to help with the inflammation that is going on around the lining of her stomach and the balloon of the Gtube.<br />
She had a reaction to the internal stitches used and she has had horrible muscle pain. Normally, a tube is placed more mid-line... picture someone with a six-pack. There is a divot down the center of their torso where there is no muscle. This is where tubes are placed. Because of all of Liz's surgeries, her surgeon had to place her tube to the side, which meant he had to cut through muscle. Painful now, but slowly healing.<br />
<br />
Last week she started retching more often, having pain, and she had two days of dizziness and feeling faint. A series of xrays of Wednesday confirmed that she was impacted with stool again, and that was contributing to her symptoms (impaction contributes to dehydration). She went through a clean out at home Sunday and Monday, which has been horrible. Usually she doesn't have as difficult a time as she's had this week and it has been awful to watch and help her through. Our goal is to keep her from having to be hospitalized this week. On top of the impaction and clean out, she is on day 10 of a nasty cold/viral thing and has felt pretty sick with cough, congestion and fatigue. We are praying it does not turn into a sinus infection which would be the worst thing that could happen for her right now.<br />
Next Monday, she will begin another clean out at home and then on Tuesday, we'll head to CHLA for her to be admitted for the week for manometry studies.<br />
She could definitely use prayer.<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF299bAv3x1UwkxbkkJgqEc7JkGb-tY0YTBIfE4rQE3fBqwMGMUIPBuyhahVkYkuUn1xd9ajZEH6nKI8_9qzYLsBTI3V5KbkNAZQoZa_sLQPtF9932jYEiUjO59tj1YPvjeS7OHxv660A/s1600/010.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF299bAv3x1UwkxbkkJgqEc7JkGb-tY0YTBIfE4rQE3fBqwMGMUIPBuyhahVkYkuUn1xd9ajZEH6nKI8_9qzYLsBTI3V5KbkNAZQoZa_sLQPtF9932jYEiUjO59tj1YPvjeS7OHxv660A/s320/010.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is a move Jackson calls the "X-ray" : )</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHu41z32OpM8LGRDTshoBrv8rSLBCJraAEuuVfUYc_4yzI1ndO-7TE3d99OEIzcJFg_TxYnNzxINWHVEjRA_GeFQpx2Cl7Pb1HHuJE2UUhZOzJaQ8WR9SgL_WETD2ZESIZ8-KQ68pK3aM/s1600/013.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHu41z32OpM8LGRDTshoBrv8rSLBCJraAEuuVfUYc_4yzI1ndO-7TE3d99OEIzcJFg_TxYnNzxINWHVEjRA_GeFQpx2Cl7Pb1HHuJE2UUhZOzJaQ8WR9SgL_WETD2ZESIZ8-KQ68pK3aM/s320/013.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kate had a visit to the doctor for a physical. She grew nine and three-quarter inches in <br />
just two years! She is strong, healthy and going to be TALL!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvvSRB_DRhezN9RIY0YtJO59xBaheMH_2KI0C6a2lRjU4W_3oyHL-1w1pB69j2Ihb2BNZzQwfJGvAeq28ZeaNe9t5fLBM38iDCorJ190sl5bv8oWFz4-OokYWtRCLf-p9pYk6Jqz8luXw/s1600/014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvvSRB_DRhezN9RIY0YtJO59xBaheMH_2KI0C6a2lRjU4W_3oyHL-1w1pB69j2Ihb2BNZzQwfJGvAeq28ZeaNe9t5fLBM38iDCorJ190sl5bv8oWFz4-OokYWtRCLf-p9pYk6Jqz8luXw/s320/014.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tired eyes but big smiles for us both.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHratmU2n8cFyLo7i2BdyKZsyTT4f5kcasQBBZUJOt2tq5zmMnNOStGF3euhDzaPBjP1a7z-4Pl2dMgCUZEH45ocpxDKCWcpSXisAzd6kHU_n9XFYiJdpLwb4s8nkCLPPF09kwTV5tBKY/s1600/015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHratmU2n8cFyLo7i2BdyKZsyTT4f5kcasQBBZUJOt2tq5zmMnNOStGF3euhDzaPBjP1a7z-4Pl2dMgCUZEH45ocpxDKCWcpSXisAzd6kHU_n9XFYiJdpLwb4s8nkCLPPF09kwTV5tBKY/s320/015.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liz's surgeon. When you pray for her during her surgeries, this is the man you<br />
are holding in prayer as he holds her life in his hands.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-ixbZGh8OYiyPxeRf-KuejwTUSWqDMD9H745oVFMCCvV6dJTu4nQhdBc04tMaG4Sm-3QlFVsjKpiTjSWS2HtsDwlBRlmmnRJ_Vv9v-6Y8hZ26OCkWPKwaiSsj-VzaH-bqd9pOCzfsSug/s1600/022.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-ixbZGh8OYiyPxeRf-KuejwTUSWqDMD9H745oVFMCCvV6dJTu4nQhdBc04tMaG4Sm-3QlFVsjKpiTjSWS2HtsDwlBRlmmnRJ_Vv9v-6Y8hZ26OCkWPKwaiSsj-VzaH-bqd9pOCzfsSug/s320/022.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liz has missed the last eight days of school : ( Here she is on a healthy day giving herself <br />
meds through her tube while she does homework.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisjM97rMtCpttSVVCNH0dPsqegQkeRvupnpmPxf56MugnmRSWiwnzww1RhrziNLmmSp8AcNGo2ThMhckYp-fmhtMB3My1tqLL62YteQrVZe7nvylNLS4KPjljrwTE-aa-RgGttLE1KZA8/s1600/pinterest1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisjM97rMtCpttSVVCNH0dPsqegQkeRvupnpmPxf56MugnmRSWiwnzww1RhrziNLmmSp8AcNGo2ThMhckYp-fmhtMB3My1tqLL62YteQrVZe7nvylNLS4KPjljrwTE-aa-RgGttLE1KZA8/s1600/pinterest1.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This touched Liz and she shared it with me. <br />
How amazing is she? </td></tr>
</tbody></table>
Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-38736615632974998442012-09-17T22:04:00.002-07:002012-09-17T22:04:15.119-07:00This"I don't know how to do this." I must have said that to myself a dozen times today.<br />I just don't know how to manage everything. I am trying so hard to make things normal in this home, in our routine, and in our family, but this is <em>not</em> normal. <br />I am in tears tonight as I feel a huge weight in terms of Elizabeth. We are trying to keep her in school, but it isn't working very well. I feel a tug to pull her and do home and hospital teaching like we did last year, but I know how badly she wants to be in school. She thrives on the social aspect of school and she truly likes being in the class room. The fact that she has a twin sister going off to school each day adds a whole level of complexity. <br />Still, it is hard for Liz to keep up with everything when she misses a day. She was put in all accelerated classes, except for math, and so she has even more work than she would otherwise. She is starting to feel the stress of it all and that is not a good thing. Between the doctor's appointments, hospital stays and days she is home not feeling well it adds up to being just too much. I don't know how to do this.<br />
My gut tells me to pull her and help her recover and get strong, but then I would be taking away the wonderful, positive effect school has on her mentally; and honestly, her mental health is as important to me as her physical health.<br />Such a difficult decision. I was hoping she would have more time until we would have to make the decision to pull her or not. Once flu season hits, it will be telling for Liz. Either her body will be able to fight all the infections and viruses, or it won't. Now though, she isn't recovering as well from the surgery for the GTube as we'd hoped, and she isn't doing well in other ways. <br /><br />Her stoma (the opening where her Gtube button is) isn't healing as quickly as it should be and now she has developed pussing, bleeding and granulation. Gross.<br />Last night and today she had an elevated temp and we are hoping it isn't related to the stoma which would show signs of infection.<br />She had a bloody nose four times Saturday, and each one lasted at least 20 minutes. This makes us think her platelets are lower than her usual low counts. We are off to the doctor again tomorrow.<br />Blah! <br />
<br />
Today I have felt like I am not the one who should be caring for Liz; like I am not the right person to help her get well. I know that this is just my fatigue and frustration talking, but it has been such a feeling of weakness.<br />In perfect timing, I got a boost tonight. Elizabeth showed me part of an essay she wrote for an assignment. It touched me in a way only my child's pure and loving heart could and I took her written words as an answer to prayer. <br />"<em>My mom is the person I admire the most because she is patient, caring, loving and hardworking. Every single day my mom never stops."</em><br />I don't know how to do all of "this", but I do know that I have to keep going because little eyes are watching, and I have a lot to live up to.Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-65320699434621111382012-09-12T14:51:00.001-07:002012-09-12T14:51:14.129-07:00If Only<a href="http://www.telly.com/AND2B?fromtwitvid=1">http://www.telly.com/AND2B?fromtwitvid=1</a><br />
<br />
<br />
I LOVE this song. Along with liking the song so much, the message goes along with much of what I have been feeling lately. <br />
I will admit that I have been struggling with "what" I am; what my role is in this life. Before I go on, I will remind you that I consider it a privelege to be able to take care of my three children. I also consider the messy, difficult, taxing role of caring for Elizabeth a huge privilege! <br />
Having said that, candidly I will also share that at times I feel "if only." If only I could be contributing more to the family or if only I could work, then we would be able to take vacations, buy luxury items, not stress so much about medical bills. <br />If only Liz wasn't sick. If only my husband didn't work so very hard and yet we are in a constant state of drowning in medical debt. If only life had gone according to my plans. If only I knew that things would turn out alright in the ways we want. So many if only's. <br />
We <em>all </em>have them, don't we?<br /><br />Last night, as Walter and I had some quiet time to talk (if you have a mental picture of us cuddled and talking in whispers or sharing a glass of wine and having deep conversation, throw that out. I was watering when he drove up from being at work and we stole a few minutes alone to talk as I threatened to hose-down any child that got in the way of our conversation : ) ), I told him<br />"This <em>is</em> what I am supposed to be doing. I am supposed to be taking care of Jackson and Kate. And, I am <em>mean</em>t to take care of Elizabeth during this time - nurse her back to health, get her through this horrible time; help her get through school, help her to get strong- so that she can be the best person she can be when she is older. So that she can be the person <em>she</em> is meant to be."<br /><br />Life can rock us to the core- all of us. It can try and strip away security, comfort, health, plans.....<br />but if we try hard,<em> if<strong> I</strong></em> try hard, and stop focusing on the "if only's", it won't take away who I am meant to be. Which for now may be a struggling, tired mom. That is alright, because I am rich in so many other ways and I know that I am doing exactly what I should be right now; <em>exactly what I am</em> <em>meant to be.</em><br />
<br />
<br />
{<em>Some people are so poor all they have is money. </em><br />
<em>Diamonds, some people waste their life counting their thousands.</em><br />
<em>They can't afford what we've got, not even the kings.<br />I found the world in you.<br />Your arms around me are worth more than a kingdom.<br />The trust that we feel, the kings never felt that. They can't afford this; this is priceless.<br />They can't afford what we've got, not even the kings</em>.}Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-9973823745266832762012-09-05T11:32:00.002-07:002012-09-05T11:32:48.460-07:00Don't Say First DayElizabeth was discharged from the hospital late Monday afternoon. Yay! We are always so happy to come home to our loves and to be away from the hospital. She'll follow up with all of her specialists in the next two weeks and she'll get blood counts again soon to make sure her counts have come up some.<br />Liz is doing pretty well. She is having some bleeding from her stoma, so we will go to the doctor tomorrow to get it looked at. Last night she woke up in pain, but she never lets her pain get in the way of what she wants to do........<br />
which today means attempting her first day of middle school! She is half crazy, half stubbornly resilient, and she insisted on going to school just like everyone else. I knew I needed to let her attempt the day because we have no idea what this year will bring. If she is not able to fight infections or if she is too sick, she'll be forced to stay home again this year like she did all of last year. <br />I have been crying for the last two hours since I dropped off the kids at school because I am so worried about Liz. We have been together, literally, all of the time for over a year. My gut says she is not ready for school today as she is still recovering, her counts aren't great, and her stamina isn't there, but for her emotional and mental well being we had to let her try.<br />
Jackson and Kaitlin were happy to walk into school this morning. How in the world can I have children of my own who are old enough for middle school?! It just seems impossible. I pray the girls have a great experience and make lifelong friends in these middle school years, just as I did.<br />Jackson started Kindergarten! How sad that for the first time in seven years, I will have an empty home during the day now that all three are in school. <br /><br />Here's to a wonderful, happy year of learning and firsts. As Travis said when he was little, and we continue to say now, "Don't say first day!" <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEGl9K5bSX7Lffqi7uZqgx9WfmMPWktWSWH8x6GG3RrRZO4z3OJ4ZFqmi8Zn5lBoUiel9cdTWb1sosLoKnQ9oLcBa-IQLWwcjU4hjw3Pngez2yqvEFrAPdg2yF3PRyM-r3fVTcgwk8geA/s1600/1474.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEGl9K5bSX7Lffqi7uZqgx9WfmMPWktWSWH8x6GG3RrRZO4z3OJ4ZFqmi8Zn5lBoUiel9cdTWb1sosLoKnQ9oLcBa-IQLWwcjU4hjw3Pngez2yqvEFrAPdg2yF3PRyM-r3fVTcgwk8geA/s320/1474.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First day of Kindergarten and first day of 6th grade.<br />Jackson- 6 Liz and Kate-11</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyvp7XWrcxayDUUcUgzt9spdwzRox8waSNvsnpvK3LLOmClSA3BDwCbLJ_7zMF32WbnXcVFFoDi6UbDOCg14RUtXESpjL_VvuGqbLJ9PnmYaGrXReSnexVZHMsd1f_JMBFsdEqG4eMuNc/s1600/910.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyvp7XWrcxayDUUcUgzt9spdwzRox8waSNvsnpvK3LLOmClSA3BDwCbLJ_7zMF32WbnXcVFFoDi6UbDOCg14RUtXESpjL_VvuGqbLJ9PnmYaGrXReSnexVZHMsd1f_JMBFsdEqG4eMuNc/s320/910.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look how they've grown. This was last year.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuE5ZgH2ck2OI6c0jmG9IuYvXn4_nBEA_yQ6u7TLU1J2IFoFht8_3shpHdFbu5w8WZfGCUDGMSP70N08W7sMHitiORa0mTeOvDIMZAGwZtjlgXauTZZBb9USnQX4X7Q2aJKVdg6s436ag/s1600/1464.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuE5ZgH2ck2OI6c0jmG9IuYvXn4_nBEA_yQ6u7TLU1J2IFoFht8_3shpHdFbu5w8WZfGCUDGMSP70N08W7sMHitiORa0mTeOvDIMZAGwZtjlgXauTZZBb9USnQX4X7Q2aJKVdg6s436ag/s320/1464.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My beautiful, hard working, pleasing, kind Kate.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUPAgRrfPfXc6ISyYBEfZw7snjQJfSx6NvJLa0XYA3mCFBcgo616BEvQxvbXfxnYZNhnUqF_J_-jiknKOwMkRZ11OI7xqVifxwOQEcitkgBU350Csd_QCvIY3Egb4LAaxv3W0jL0hI8oA/s1600/1467.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUPAgRrfPfXc6ISyYBEfZw7snjQJfSx6NvJLa0XYA3mCFBcgo616BEvQxvbXfxnYZNhnUqF_J_-jiknKOwMkRZ11OI7xqVifxwOQEcitkgBU350Csd_QCvIY3Egb4LAaxv3W0jL0hI8oA/s320/1467.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jackson's teacher is amazing (!!!) and happens to be our neighbor,<br />He is hilarious and told us "I don't think having my neighbor for my teacher is such a good idea".<br />He is totally prepared for Kinder and is going to have a great year!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-YAneAITZxMOFGmRlF59zXRYZkI-DfeXZJvTISvzXPLh9qH3tfJ1RfMevvB7RDpzIwhYISeMNnQXyP0ndVJHunYcDrnrK2FJsW_k5v37-xDh3IxB-9XbbGQzhjhVKr3OKsVcBIZLFKu0/s1600/1473.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-YAneAITZxMOFGmRlF59zXRYZkI-DfeXZJvTISvzXPLh9qH3tfJ1RfMevvB7RDpzIwhYISeMNnQXyP0ndVJHunYcDrnrK2FJsW_k5v37-xDh3IxB-9XbbGQzhjhVKr3OKsVcBIZLFKu0/s320/1473.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My shadow for the last year is attempting to leave me and have the normalcy of<br />
school that she deserves. She is an example to us all of never making excuses, practicing mind-over-matter,<br />
and believing that strength comes from within.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1XH2Hmg432nIti84mKzH_DKWGE-l8kLyDj3G9WTPQ-RTQH9UYKBS7x8oJLarT02r64HAM4of6d90jopsHbdboeG8-Mz0W4qsYJ7-DZXp4l_2cdo_f9Ctp0NJRPcR5Ge703lzkKlzV21E/s1600/1477.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1XH2Hmg432nIti84mKzH_DKWGE-l8kLyDj3G9WTPQ-RTQH9UYKBS7x8oJLarT02r64HAM4of6d90jopsHbdboeG8-Mz0W4qsYJ7-DZXp4l_2cdo_f9Ctp0NJRPcR5Ge703lzkKlzV21E/s320/1477.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The girls have always been in class together. This year they will separate for the first time.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZEJKEIWU9J88pN55rRlnDtQBhOUdF4seIGHJwtrtWBdgZpYHGjXdm9t4hnkFM2cMksrTKPOv83gY34hPvMTndGxf8UHyY_8IdPqRXlCg0Rt95CNr64XU2Etyz3EPMVVH-4-1mhVUll6k/s1600/1481.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZEJKEIWU9J88pN55rRlnDtQBhOUdF4seIGHJwtrtWBdgZpYHGjXdm9t4hnkFM2cMksrTKPOv83gY34hPvMTndGxf8UHyY_8IdPqRXlCg0Rt95CNr64XU2Etyz3EPMVVH-4-1mhVUll6k/s320/1481.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jackson and Taylor are at the same school and in the same class! <br />I just kept telling him "Do <em>not </em>hit your cousin at school!!!"</td></tr>
</tbody></table>
Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-6504408314589746522012-09-02T20:17:00.003-07:002012-09-02T20:19:51.219-07:00UpdateLizzie is doing well! She has had some bumps over the last two days, so she is still in the hospital, but overall we think she is doing well.<br />
I could go over all the medical talk and things that have hindered her going home, but I will keep this post light and blog with photos of the positives.....<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSgl5FCRVLszO1ai93rAqQQQCzUOYqQbYyzHCsBscop2dzqFLuJJBaqyOcJi-vE1-n7ILseYjuo9b84UNBFEVVGcd8xjUlscUw_aErQc5_qYEhNCxIlbHm0RgyGoZ1GL-l_OSSSEYMRcE/s1600/001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSgl5FCRVLszO1ai93rAqQQQCzUOYqQbYyzHCsBscop2dzqFLuJJBaqyOcJi-vE1-n7ILseYjuo9b84UNBFEVVGcd8xjUlscUw_aErQc5_qYEhNCxIlbHm0RgyGoZ1GL-l_OSSSEYMRcE/s320/001.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thursday night Liz started with a distended belly. Surgery was called in around 10:00pm, and it made for another long night<br />
She finally was able to get some rest and looked peaceful.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhewziCuddj0xFrSfyvL6bRu-ljw1maQC2Rgy_C_c39yduXr6ztffRHk51GD666HQOCyBH-W2GPuuYLYHEcD8_6kV1CvuHrNgjbGRZaZjPj5CIU23PrE8DW6e01T4qjJkAboT651iBbZ5U/s1600/002.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhewziCuddj0xFrSfyvL6bRu-ljw1maQC2Rgy_C_c39yduXr6ztffRHk51GD666HQOCyBH-W2GPuuYLYHEcD8_6kV1CvuHrNgjbGRZaZjPj5CIU23PrE8DW6e01T4qjJkAboT651iBbZ5U/s320/002.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liz has a history of post-op pneumonia, so she worked hard this time to expand her lungs.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIKFt8K2kuyGao-rHrCWESwX4TwXeU2imMoiF8WDrh6EOsneBIIcuC3WSIYQDipkhF2urTpO7wsqDkYOg3MfALoX46s4QxXRJvthTHOiXTwpC3pcGqYEP39GaNagNyIPSZVd5EgVoN_F0/s1600/003.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIKFt8K2kuyGao-rHrCWESwX4TwXeU2imMoiF8WDrh6EOsneBIIcuC3WSIYQDipkhF2urTpO7wsqDkYOg3MfALoX46s4QxXRJvthTHOiXTwpC3pcGqYEP39GaNagNyIPSZVd5EgVoN_F0/s320/003.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking helps keep her lungs healthy, too.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWBtA99ZvTpVge4BEybxYouUu3z13HR4JyhRfi7rA7NbZlojx_QQmVQYRjw3j1bDzZaClM4NETpFaxdC7I5Gq0sb25nyaemOIS0nNyEqmciw_azfQ68uSQr1sW2fvi0UnlLU0A6k-nGLs/s1600/005.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWBtA99ZvTpVge4BEybxYouUu3z13HR4JyhRfi7rA7NbZlojx_QQmVQYRjw3j1bDzZaClM4NETpFaxdC7I5Gq0sb25nyaemOIS0nNyEqmciw_azfQ68uSQr1sW2fvi0UnlLU0A6k-nGLs/s320/005.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liz has wanted privacy this hospital stay, and I have to respect that and restrict visitors. We did <br />
enjoy having Alyssa, Juliette and Makayla here yesterday morning, though. Many of you know of Alyssa and how she was<br />
<em>beyond</em> very sick for a long time. Now look at her- she is amazing!! She's also sassy, hilarious, and a great cuddler. </td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuKGYEJL_gLUQD0Sg2jyn2CjHCccJevqxbH6h0vVoo5Ccu4gYF5MCwS3DKrI3Rerim8gE25VABcsHbpHvY3VPnJISCTBGb7Zu32oFOwpukycdfoNOwCPyOr21vJ_A10f57U1v8zNBc6BE/s1600/006.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuKGYEJL_gLUQD0Sg2jyn2CjHCccJevqxbH6h0vVoo5Ccu4gYF5MCwS3DKrI3Rerim8gE25VABcsHbpHvY3VPnJISCTBGb7Zu32oFOwpukycdfoNOwCPyOr21vJ_A10f57U1v8zNBc6BE/s320/006.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liz graduated to jello this morning! Finally! The poor thing has to gain back the weight she's lost this week( she lost a pound overnight, alone), on top of what she needs to gain overall. Thankfully, the g-tube will help her do that!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqL_uE21cxs3Znts1yt3xUzWh5XlwEGAEIKpQs80jXWkqRcR0zY3cd7scDJQayu6WHlAMEgx3p2Xn-gLzgKFy0KgPYHSP1TaLD2anF9jeeOtguVk5qRNmcHa0rfTUAy4kudPFOBqSw5KA/s1600/008.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqL_uE21cxs3Znts1yt3xUzWh5XlwEGAEIKpQs80jXWkqRcR0zY3cd7scDJQayu6WHlAMEgx3p2Xn-gLzgKFy0KgPYHSP1TaLD2anF9jeeOtguVk5qRNmcHa0rfTUAy4kudPFOBqSw5KA/s320/008.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lizzie's friend Maryam is inpatient right now, too. She is in the room next door and those cuties knock in code on the wall that is behind each of their beds. This knock was to ask Maryam to escape the Unit and walk outside....</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIiRuTfsda-dbgiJ1LkvkVgVazHYRf5c35nwwsC0_sAUw3sslSJFLxLAdeAaE6Ja87SxG9EqtrItwEE36i5ql2wb1gO66Q17zvE-_eHfkIFvzkW7zkxMrLFMX9yghdejXKAQzIRt0pgBk/s1600/maryam1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIiRuTfsda-dbgiJ1LkvkVgVazHYRf5c35nwwsC0_sAUw3sslSJFLxLAdeAaE6Ja87SxG9EqtrItwEE36i5ql2wb1gO66Q17zvE-_eHfkIFvzkW7zkxMrLFMX9yghdejXKAQzIRt0pgBk/s320/maryam1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">........look at them peering and planning their escape</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi87tm-yJsj4nSMN0AND3Jz-Ca0hbFWWwK6hJwS0dazZmfpGpuIiPq9oRgilDiXpwjVK1HJGvZgMaulMmZBDVpy3C1uX4A9jbYtySPs7kOwgIClhbuayZTKSXrmeZa2zZl_FZFcY_HG0iE/s1600/maryam2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi87tm-yJsj4nSMN0AND3Jz-Ca0hbFWWwK6hJwS0dazZmfpGpuIiPq9oRgilDiXpwjVK1HJGvZgMaulMmZBDVpy3C1uX4A9jbYtySPs7kOwgIClhbuayZTKSXrmeZa2zZl_FZFcY_HG0iE/s320/maryam2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">.......run girls, run!! Karen (Maryam's mom) and I couldn't stop laughing at our girls and their "old lady" strolls as they <br />
pushed their poles and made a break for freedom.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOa1VxpVcjBW9ygjkhKBvXxGl_IJ1l45g7hXXHRVKZn52AV9w6EVX58mRvsy7NMCm4_NZzsD0tQzP6mqPmGT2XkyEJ7ulyckVXrcjWrjG6owlhLbMX2ADSTdd-eY8T2GDZQ7XNl7Bih7M/s1600/010.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOa1VxpVcjBW9ygjkhKBvXxGl_IJ1l45g7hXXHRVKZn52AV9w6EVX58mRvsy7NMCm4_NZzsD0tQzP6mqPmGT2XkyEJ7ulyckVXrcjWrjG6owlhLbMX2ADSTdd-eY8T2GDZQ7XNl7Bih7M/s320/010.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ahhhh, fresh air for the first time in a week and a visit to the koi pond.</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
Liz is doing a great job in here. It was disappointing to have setbacks an to still be inpatient, but I am greatful to know that we are over the most difficult parts of this stay and headed home soon. <br />Ooooo.... one more positive- I have quit soda while in here!! It was seriously a detox, and my head hates me for it, but I figured if Liz can endure her suffering, surely I can motivate myself to give up Coke. I did it, and I am not going back. Yay!</div>
Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com1tag:blogger.com,1999:blog-4040789413205747540.post-28127444700981621242012-08-30T19:16:00.003-07:002012-08-30T19:16:27.724-07:00Post SurgeryFor those who are wondering about Elizabeth's surgery......<br /><br />Most importantly, she did<em> well</em> during surgery and Dr. N was able to perform the surgery laparoscopically. Both of those things are what we prayed for most, and we are grateful. Surgery took a little over two hours, as Liz has tons of scar tissue from all of her previous surgeries, so Dr. N. had to take a lot of time cutting away and making the stomach accessible for placement of the G-tube. Dr. N. was dedicated to taking as much time as he needed to getting through the scar tissue in hopes that he wouldn't have to do an "open" incision (along her scar line from her last open surgery). So great that we avoided that!! Liz was nervous for surgery of course, but she trusts Dr. N. literally with her life and as soon as he came to see her and gave hugs and assurance in pre-op, she became more comfortable. <br /><br />Last night was<em> loooong</em>! Elizabeth didn't fall asleep until 4:45 this morning and only slept two hours after falling asleep. She was horribly nauseous and in so much pain all night. Finally now, 32hours after surgery, she seems more comfortable and we are hopeful that tonight will be much better. I'll cry if she suffers again tonight. I was exhausted and worried last night as she endured the pain, and I was devastated as she cried that she was mad at me for allowing her to have surgery in the first place, but so much more than all of that, I felt just so privileged to be able to care for my sweet girl in her hardest times. <em>Such a privilege</em>!<br /><br />We are encouraging her to cough and blow bubbles as well as use the spirometer, as Liz has a history of post-surgery pneumonia. Getting out of bed to walk more is our next goal for tonight. I asked for her last dose of pain medication given an hour ago to be Tylenol with codeine instead of Morphine so that she can work towards home in that regard too. <br />She has not had anything by mouth since Tuesday, and only had liquids on Monday, so tomorrow we will allow her to have a few sips of water and then the GI team will start using her G-tube, first putting only Pedialyte into her stomach, and then advancing to formula feeds once she proves she can tolerate feeds.<br />Tomorrow Walter and I will begin G-tube feeding teaching here with the Clinical Nurse Specialist. We'll be taught by her and then a home health nurse will teach us how to use the pump that Liz will use at home, once we get there.<br /><br />Cannot express enough how my Elizabeth amazes me with her strength. She has coping skills and strength that proves over and over how she can get through anything. One day at a time, keeping her eye on getting well.<br /><br /><em>Grateful</em> for your prayers and encouragement.<br /><br /><br />Pictures below...... warning, last two are a bit graphic.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj33eRctSiDPyxGduKQoWM1HFdfuf18e6-0HjgiBXRsEBPlZTVW4ooGcQL_DcjDKY8D3MVC7wvzx2ibgjtsolJGA0O5X7PtV_RpmvNpIO67-0h_k40B-W6HHKkIAYSIUpsZZ-kBI5FIkAQ/s1600/021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj33eRctSiDPyxGduKQoWM1HFdfuf18e6-0HjgiBXRsEBPlZTVW4ooGcQL_DcjDKY8D3MVC7wvzx2ibgjtsolJGA0O5X7PtV_RpmvNpIO67-0h_k40B-W6HHKkIAYSIUpsZZ-kBI5FIkAQ/s320/021.JPG" width="213" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-lZadhVUfVz7HcajVHZHQXzCEsWbDRyyLPKK6ucOJgSnzAsioib6tDW59CNYBUNr7dZVFrCQUBvtKzxqihKXYWd-dLp1fHKlvNd_34W1bCaSSLR7w4h_b2Jh9xL1KLTeSxSz2-vECFHg/s1600/027.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-lZadhVUfVz7HcajVHZHQXzCEsWbDRyyLPKK6ucOJgSnzAsioib6tDW59CNYBUNr7dZVFrCQUBvtKzxqihKXYWd-dLp1fHKlvNd_34W1bCaSSLR7w4h_b2Jh9xL1KLTeSxSz2-vECFHg/s320/027.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I carry this image with me each time I leave my baby in the hands of her surgeon. </td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDdrjBvO_1Pz15n9FVD3Y2dV5CaXbvBmWgpd3MDoE9iTAcVmypw1JNTmOq0d_hIC5DKXLaGl3Ca6s1lPQjznDlo_1zVOkwFiZj1F9WVHpwdid58IGYRHJ799oA0O19hvC_F3o8QPuoiCo/s1600/028.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDdrjBvO_1Pz15n9FVD3Y2dV5CaXbvBmWgpd3MDoE9iTAcVmypw1JNTmOq0d_hIC5DKXLaGl3Ca6s1lPQjznDlo_1zVOkwFiZj1F9WVHpwdid58IGYRHJ799oA0O19hvC_F3o8QPuoiCo/s320/028.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In Pre-op, after hugs from Dr. N., and beating me in a game of Ipad checkers!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdSHPQOYLlz29nLwDVMi9pkFz1jEJ5ttFlkDAUrP6pKJBJ7tqPwP2fmEuk6NgHX2b8V_LLX2R_JkmNuuS2svawvgQ-9fxgSO8FefA6r8WRl_6dPD4Ahux6LPEAZnqZkW1Av_vvdzDqfec/s1600/029.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdSHPQOYLlz29nLwDVMi9pkFz1jEJ5ttFlkDAUrP6pKJBJ7tqPwP2fmEuk6NgHX2b8V_LLX2R_JkmNuuS2svawvgQ-9fxgSO8FefA6r8WRl_6dPD4Ahux6LPEAZnqZkW1Av_vvdzDqfec/s320/029.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Three holes and the G-tube.... Dr. N used two existing scars/surgery sites during this surgery to spare <br />
adding many more scars to the 13 she has already on her tummy. In these first days, the tube is draining into a bag.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrncwyTMn39XvdOtnljxeaCs4oxaZap30FJNzsnv06kFFbvg-fqNHSE7E6VkQEbxhYMiaEnLtHdhaUWapeXBYcATefVCIY9kbeGhl-zNxJIl9ctgbwrUP5YvE2WzA1wg2lSR94Sm2ecGk/s1600/030.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrncwyTMn39XvdOtnljxeaCs4oxaZap30FJNzsnv06kFFbvg-fqNHSE7E6VkQEbxhYMiaEnLtHdhaUWapeXBYcATefVCIY9kbeGhl-zNxJIl9ctgbwrUP5YvE2WzA1wg2lSR94Sm2ecGk/s320/030.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her tube is draining bile/stomach juices now, but after recovery it will be used for feeding. Liz will be fed at night, and in the morning I will detach the tube and she'll just have the "button" (the white part) in.</td></tr>
</tbody></table>
Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-10824462937109069672012-08-28T20:50:00.002-07:002012-08-28T20:50:38.313-07:00It is Time...."Mom, I think it is time for the G-tube. I can see how it is going to make me stronger."<br /><br />Liz just said these words to me as I was "making" my chair bed for the night. A half hour earlier, our friend from Child Life came by to talk to Elizabeth about the G-tube, heading to the OR tomorrow, and shared a YouTube video of a 14 year old girl who talked about life with a tube. <br />Our girl is so very smart and aware of her body, and she knows it is time to do this in order to get stronger, and maybe even much better in terms of her bone marrow, cells and ability to fight infection. Today I had further confirmation that this is the right choice, as her Prealbumin is now the lowest it has ever been. Her body needs the nutritional support that only the tube can safely give Liz at this time. Severe failure to thrive is a tough diagnosis to see for your child.<br />
<br />
It is important to me that Liz always feels informed. I don't sugarcoat things and I have always been honest with her about her health or things that her care team wants to do to her. I respect that some parents don't share the same with their "sick" kids, but for me, it is what has always felt right; I just want her to feel as in control as possible, and informed and involved. <br /><br />Last night Liz actually slept well. She didn't start needing to, um, run to the bathroom until 7:30am. She has been going through the clean out process <em>all </em>day, but it seems to be more gentle than other clean outs have been and she is not as uncomfortable as some times in the past- definitely a tender mercy.<br />At 11:00 pm, she will get xrays done to confirm that she is cleaned out enough for surgery. Her GoLytly will run until midnight, a full 24+ hours of clean out for poor Liz's bum and gut. She is amazing and has done such a great job.<br /><br />If her impaction has cleared, surgery is a go for tomorrow. She is the fourth case for her surgeon, so she should have an OR slot in the afternoon, we will hear the time later tonight. <br />Elizabeth's platelet count has dropped and so she'll have her counts done tomorrow morning to check again. The surgery team said that they are more comfortable having blood ready for her in the OR, too, so that will be available in case it is needed. I was very upset today because I didn't donate blood to bank for Liz last week. I have <em>always</em> donated blood (Meg and and Charnold have too) for Liz before her surgeries, just in case it was needed. I am losing my mind and didn't even think about doing it last week. I couldn't donate for her today because it is a three day process. I seriously messed up.<br /><br />I am a bit nervous about the surgery because it was explained to me again today that her surgeon may not be able to place the G-tube laparoscopically. Because of all of her previous surgeries, she has tons of scar tissue and her stomach has been manipulated so many times that she is kind of a mess. Dr. N will try his best to do the least invasive approach, but if he feels it is safer and necessary, he will open her and place the tube that way. It would be a more difficult recovery, so we are praying for the laparscopic approach.<br />
<br />
Walter is off tomorrow and will be here with us. Jackson has his Kindergarten orientation and I am sad to miss that with him, but Walt will try to be there and if he cannot, my sister will attend on our behalf with our big Kinder boy.<br /><br />Tonight I am proud of Liz and myself. The last years of this difficult stuff has made us a good team and we remind each other to hang in there and focus on just getting her through each tough day and closer to home. <em>She can do this</em>. <em>We</em> can do this.<br />Liz is right, it is time. Please hold her in your prayers tomorrow.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5jfEyXzLRC2WGEOCwpl0PTGAxj9xijSoo-TLUu4qXIr4JlyyPbsWqaLyq7WNf9qmm_-HMYcvMwXrQC8T7jd35Sfc7fG5SaQ_qKJbuN_BayaRrpm0WiVoH2dB1qBSH48SJe3ctRKiar44/s1600/lizlola.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5jfEyXzLRC2WGEOCwpl0PTGAxj9xijSoo-TLUu4qXIr4JlyyPbsWqaLyq7WNf9qmm_-HMYcvMwXrQC8T7jd35Sfc7fG5SaQ_qKJbuN_BayaRrpm0WiVoH2dB1qBSH48SJe3ctRKiar44/s320/lizlola.jpg" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lola is a favorite visitor for Liz! She came by yesterday as we were getting settled into our room/</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHV3JMTMIBUrgV4ko7X2KX_2AzyTqvte7Vvbq1sY2VE1wGsffzBLrK6jOwz-jInVNwYdf81Lg4H9bmn47lZR-P2kMcjKiY7PwCbw21dy6mxbBmu4geYAAixhzeNKulJhIeoeI-JtQwRNk/s1600/lizphone.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHV3JMTMIBUrgV4ko7X2KX_2AzyTqvte7Vvbq1sY2VE1wGsffzBLrK6jOwz-jInVNwYdf81Lg4H9bmn47lZR-P2kMcjKiY7PwCbw21dy6mxbBmu4geYAAixhzeNKulJhIeoeI-JtQwRNk/s320/lizphone.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liz got her own cell phone as a reward of sorts. She and Kate have shared one, but given that Liz didn't go to school or to a practice of any kind last year, Kate had the phone the majority of the time.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4zSW8pjyVikZm1jCOUnWStXw9vK0u_ibiAHDBrgEju9z1y3klv0wNaECUmRYREQkj20E0lIuxXKlaLfJq65gBsMCDdsvgu6moCYOipyQlUSBKL0Lu1Ibk3kr2ANczYr8-aEjkatRKmzA/s1600/lizlaurel.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="314" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4zSW8pjyVikZm1jCOUnWStXw9vK0u_ibiAHDBrgEju9z1y3klv0wNaECUmRYREQkj20E0lIuxXKlaLfJq65gBsMCDdsvgu6moCYOipyQlUSBKL0Lu1Ibk3kr2ANczYr8-aEjkatRKmzA/s320/lizlaurel.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Laurel, the amazing music therapist here, came by to play and sing with Liz today. I am always impressed at how Liz remembers to play even though she doesn't practice in between hospital stays. Playing with an IV in is impressive too : ) Laurel's sarcasm and sweetness reminds us of Kate, so it is always fun to hang with her in here.</td></tr>
</tbody></table>
Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-46190490169391554122012-08-27T22:52:00.004-07:002012-08-27T22:53:05.995-07:00Hospital Day OneMonday, not-so-fun-day. Liz was admitted at noon today. In typical ridiculous hospital time, it is now almost 11:00pm, and she is just starting the solution that will get her to start clean out. Ridiculous. <br />
<br />
Liz objected to the NG tube, and tried a few times to hide her nose when the nurses came in to put the tube down her nose and into her stomach, but she got it done and I am so proud of her. After telling Dr. L that she was angry at her and at me for "doing this to her." I know I have said before how amazing Dr. L is, and I wish in some way she could know how highly I speak of her; she is just so intent on getting Liz well. She came in to see Liz late this afternoon, and as soon as she walked in the door she said " I think people need some hugs. I know I could use a hug." She then spoke candidly to Liz about how much this whole situation sucks. <br />
After getting the NG put in, Liz told me "I knew I needed this tube. I knew I couldn't do the clean out at home as well as the tube can, I just didn't want to say it because I wanted to wait to have to do this."<br />
She is so stinkin' smart and knows her body so well.<br />
<br />
An hour ago she had an abdominal xray to get a look at how much stool is impacted now and she also had an xray of her ankle. Say what?! <br />
Yesterday at the pool, she hit her ankle on the water slide. She has complained since then about it, but I will admit that I boo-hoo'd it. By the time we got to the hospital today though, her ankle is black and blue and super swollen. It is bad enough for the doctors to want an x-ray....and bad enough for me to look a little bad because I didn't ice it or worry about it at all. : (<br />
<br />
So, day one is almost done, and the difficult part of getting the NG tube in is over with.<br />
It will be a looooong night though as our poor girl rids her body of all of the stool that is impacted. The whole process is ten times more uncomfortable as you can imagine it is. Liz just has to keep calm, endure the cramping and constant stooling, and keep her mind on the fact that 24 hours from now this part will be over and she will be ready for surgery.Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-13874274532076000442012-08-23T23:34:00.002-07:002012-08-23T23:39:39.752-07:00And Yet,Many days if you look at Liz, you wouldn't know she is sick.
Some days she doesn't feel sick. Most people would never guess she
has ever been sick.
And yet, she is.
Gratefully many days she can run and play with friends and her siblings. Gratefully she has her sight, hearing and mobility. She is smart, full of life and loves to dream of a future as a dancer and designer living in Paris.
And yet, her health over the last two years especially has gotten in the way of many of these things.
Liz hasn't attended the ballet academy in two years. She needs to sit and rest during times she is outside playing with her sister or best friends. School was not possible at all last year, and questionable for this year.
It is part of our daily life, but we move forward each day without dwelling; thinking she will get better. The days she feels good and even great make all that she has missed or had to endure seem almost surreal.
And yet, her labs, chronic infections and procedure results tell the story of how her body is unwell.
Yesterday we saw Liz's Hem/Onc doctor and his recommendation is that we take Liz to
a hospital like the Mayo Clinic so that teams of doctors from different specialties can take a comprehensive approach and all come together to try to find a diagnosis for her. He has called her Pediatrician and asked Dr. L to help us find that place.
On Monday Liz will be admited to the hospital here. Shell have the NG tube put into her nose and down into her stomach so that a large volume of mag citrate can be administered and induce a clean out. My poor baby. It is awful to place that tube down her nose and the clean out makes her run to the bathroom every few minute for hours. I hate that we have to go this again.
On Wednesday, the plan ( I say plan because things seem to always change when the OR is involved) is to take Liz to the Operating Room and surgically place the G-tube. Most often, GI docs place Gtubes using endoscopy, but Liz is so scarred from all her surgeries and her stomach is so manipulated, that it is best a surgeon open her and place the gtube. Liz is actually happy about this because she only wants her lifelong surgeon touching her, she says. Well alright then Miss Elizabeth!
Hopefully in the next two months, Childrens Hospital Los Angeles or Children's of Boston will have an opening for the manometry studies she needs done. We will go to whichever hospital has the first opening. That will be the next hospital admittance and it will be an uncomfortable and difficult week.
I will update more before Monday. Please pray for now for our Lizzie's mind. She is weary and tired, scared and mad. This is all so much for a little girl and we worry about her. I just keep asking her to please trust me and my decisions; trust that I trying so hard to make her better. I remind her that I choosing the best doctors and choices I can, and I am praying for guidance and wisdom from the ultimate healer.
Thank you for caring about our brave girl.
Excuse typos. Written on my phone.Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-26445575402235124862012-08-21T22:06:00.001-07:002012-08-21T22:06:09.932-07:00So much to update; more facts than anything else right now as I am updating mostly so that those who pray can know specific things to pray for....<br /><br />Happy news first- Today the girls were able to go to their new middle school and get everything done that was scheduled to happen on Thursday. Yearbook photo was taken, school id, uniform pieces purchased, books now in their possession.... super productive. My good friends Liz and Lynn helped me make going today rather than Thursday (the 6th graders' assigned day) possible and I am very grateful! Liz and Kate feel more prepared for starting school and Liz was so cute as she wore her school id around her neck <em>all </em>day. We just want Liz to be able to do normal, planned things and her hospitalization was going to get in the way of this, so it is wonderful that we were able to allow her to have today.<br />
<br />
Liz's pediatrician (the GREAT Dr. L.) called me today and plans have changed a bit. She and Liz's GI doc have decided that it is time for the G-tube to be placed. Both of them have been trying just as hard as I have not to have to go ahead with the G-tube, but they say it is time. For multiple reasons, we didn't rush Liz in to be admitted today, and we are trying to work out details. We all feel a time crunch though as school starts two weeks from tomorrow, so tomorrow we will talk more about whether we are admitting Liz in the next two days or holding off until next Monday or Tuesday. Usually a Gastroenterologist does the Gtube placement surgery, but because of Liz's past surgeries, she is a more complicated case. The team is asking her surgeon his opinion on having a surgeon do this instead of GI. Liz only wants (actually, she is demanding he do the surgery or at least stand in the operating room to "watch Dr. S and make sure he does everything right") her surgeon to touch her in the OR, so I'm actually hoping that is what ends up being decided on, even if it means we wait until next week. <br />
As if that all isn't complicated enough, we have also called Children's Hospital of Boston. They have a Motility Center there that performs the motility procedures and tests that Liz needs done. If they can see her sooner than CHLA can, we will go there. CH of Boston also has a white blood cell disorder clinic, and we'd be able to get her evaluated by them while there. Hopefully I will hear back tomorrow and have an idea of what the time frame is, and if they can see her in the next month or so I will start the enormous task of organizing getting records sent to them and physicians here to communicate with the team there.<br />
The idea of school makes me physically ill because I know Liz is going to miss so much of it already and I feel the stress that I know she has about that. When it comes down to it, we have to get Liz well and we are just going to have to take one day at a time when it comes to school. <br />This is just another sucky part in the whole picture. Add in that her twin is going about life doing all of the things she would like to, and Liz must be very sad. Dr. L talked to me today about her concern (and she said the GI shares the same worry) for Liz's body image and emotions. This concern is not based on anything she has seen or heard Liz say, but instead on the fact that Liz will of course have thoughts about the G-tube altering her body, having an identical twin that is growing and developing in ways she is not, and also recognizing that the tests she will have done leave no room for modesty and are uncomfortable. <br />Liz already has a wonderful therapist, so we will just watch for signs of depression. Today Liz's therapist encouraged her to journal (an on-going urging!!), and I suggested a blog, so we'll see if Liz decides to do that.<br />
We told her today about the G-tube, and she tried to be stoic. I asked her why she doesn't act sad often about being sick, and she said "Because I won't let it control me. I know I will get better and I just won't be sad all the time and let it take over my life."<br />What a grown-up answer. Too grown-up. <br />
<br />
She has many, many questions about the surgery and what will be happening over the next few weeks. Some answers I have, many I do not. Child Life will work with her once she is admitted and will explain things to her ahead of time. I am hoping to arrange a meeting with her and another young girl who has been living with a G-tube, so that she can ask her questions and hear how normal life is once you get used to having the tube.<br />
I also promised Liz that I won't sign-off and consent until she has all her questions answered and feels comfortable with the surgery.<br />
At therapy, we reminded her that feelings are OK to have and being sad or crying is fine to do.....and at that point, she broke down. She cried about her fear of the tube, missing school, wanting to be better, and her sadness over Collin's passing (which carries <em>much</em> more than her sadness over the loss of sweet Bubba. I know his death scares her).<br />
<br />
So much confusion, sadness and a bit of chaos. Amidst all of it though, I feel comfort in knowing some things: <br />
* Dr. L and I are fighting the same fight in that we both want Liz to have as much normalcy as possible and we want to be as conservative as possible in what we put her through<br /> * Liz is strong and has <em>amazing</em> faith and the mindset that she <em>will</em> be better one day. Attitude is huge when you are trying to get through something so big and also in healing...and she has a <em>great</em> attitude.<br />* I have a wonderful family and the sweetest friends who offer help and encouragement.<br />* I know that prayer changes things, and I know that Liz has many who are praying for her.<br /><br />It is unfair and difficult, cruel almost, to see our Liz have to endure so much for <em>so long</em>. There is no way to justify any of it or make sense of it, and that is upsetting in itself. Still, we can't wish it away. We can only pray, and I can just try to make the best informed choices to help our girl get better. In the end it as simple and complicated as that.<br />
Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com2tag:blogger.com,1999:blog-4040789413205747540.post-32525126185539325422012-08-20T20:58:00.002-07:002012-08-20T20:58:54.745-07:00<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKCCjFilsbAGBy3Su9Lmz4DaiS7vFAZ-PRy25tbun9ZQEgTw698W9bg1VcwQc49V5LxS7j3liwkv73ZD_XjqHaUzZX6I2D7RaImhmQZoY8Kk9j464T0xUARJsqlDFVo6XxXCawEx9T5nY/s1600/liz4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKCCjFilsbAGBy3Su9Lmz4DaiS7vFAZ-PRy25tbun9ZQEgTw698W9bg1VcwQc49V5LxS7j3liwkv73ZD_XjqHaUzZX6I2D7RaImhmQZoY8Kk9j464T0xUARJsqlDFVo6XxXCawEx9T5nY/s320/liz4.jpg" width="320" /></a></div>
<br />
This stunning girl has no idea what is headed her way and that breaks my heart. We met with the motility specialist at CHLA today. There are so many things I could report, but I don't feel like "talking" now, so I will keep this brief.<br />Liz needs some studies done at CHLA to help determine what is the cause of her motility and chronic impaction issues. She'll be admitted a few days before the day of the tests in order for them to do a clean out and ensure that she is clear of any stool. She'll then stay for the testing day and then to recover. She'll have an Antro Duodenal Manometry study, Colonic manometry study, and a repeat esophageal manometry study and repeat gastric emptying scan. This information cannot be gathered any other way and we need this done to diagnose the issue and offer her some relief. Unfortunately, we can put men on the moon, but the manometry studies are not done at many hospitals in the country, and so there is a waiting list that is months long. So unbelievable frustrating. We must wait about two months before she can get in. Ridiculous.<br />
Because it is going to take so long to get the tests done, and because she is impacted now and having so many issues from the impaction, her Pediatrician wants her admitted this week to our home hospital for placement of the NG tube (down her nose) and for a clean out. She just went through the same things in April; I can't even think of telling her tomorrow that we are going to make her do the same painful and uncomfortable things again this week. Using the NG tube means that they can give Liz the huge amount of clean out routine through the tube rather than her having to drink it all (which is so difficult for her given how small her stomach is). She'll be on a liquid diet, so the NG tube can also help for getting extra calories back into her via formula.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwmG4To7t08KHUtu6BuFUaEMN6bvHWYkk4e8A8481EbXAXBSsg2CDnL-_q8rtWqEY6yLCFCMC9fSb8tgh_YcRam1nqou2iJYMSJW9uW_3UfrNNTnQrBhkcFydIcDiKMnBCGcyWpIG4u1Y/s1600/IMG_0274.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwmG4To7t08KHUtu6BuFUaEMN6bvHWYkk4e8A8481EbXAXBSsg2CDnL-_q8rtWqEY6yLCFCMC9fSb8tgh_YcRam1nqou2iJYMSJW9uW_3UfrNNTnQrBhkcFydIcDiKMnBCGcyWpIG4u1Y/s320/IMG_0274.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is an NGtube</td></tr>
</tbody></table>
<br />Her Pediatrician also thinks it is time for the G-tube and wants it to be done this week. The G-tube is placed surgically in the abdomen, and is semi-permanent. Liz would have the G-Tube in for months or years, and would receive formula feeds at night through the tube, as it allows access right into her stomach. <br />I want to avoid the G-tube at all cost, but it is looking more and more like we don't have a choice. I am asking for a compromise and would like the team to consider leaving the NG tube in until we get the studies at CHLA done, as those results may show that she needs tubes other than the Gtube that feeds into the stomach. BUT, I know Liz will NOT want to come home this week with an NG tube because she will have the tube coming out of her nose for months, and she will object to that in a huge way.<br />Such a mess. Weighing options and risks is too much. It is all just too much and I am in a really bad place tonight mentally as I just want this all to get better. <br />I actually voiced the words "I can't do this anymore", and I feel guilty for even thinking that. I wonder if other moms like me have ever said those words, or if I am the only one who has such weakness in this situation.<br />We are running a race with no set finish line; I just wish we knew the finish line so that we could cross things off and know that Liz's hard work and bravery would bring recovery at some point.<br />I will share more later. For now, just<em> please</em> pray for our Elizabeth. Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com1tag:blogger.com,1999:blog-4040789413205747540.post-89042208070028119192012-08-18T22:43:00.001-07:002012-08-18T22:43:38.874-07:00"I want to be like her when I grow up!"Tonight I had a date with my favorite volleyball player- just the two of us. I am trying so hard to make time alone with Kate and show her that I support her passion....volleyball. I have been super lucky to have the help of family so that I can attend all of her tournaments, with the exception of one, even when Liz is in the hospital. <br />Kate is like her daddy- she is quiet and reserved until she feels like opening up and letting loose. She is silly and has a great sense of humor. She doesn't say much, but what she does say is usually very important, smart or poignant....or totally uncalled for (again, just like her daddy). Kate isn't a hugger, but when she is ready or up for it, she will snuggle into me like a baby. I am convinced she is smarter than me, and so is she, so I do double-time keeping her sass in-check. Kate totally teaches me to listen, wait, observe, and she reminds me to be intentional when I speak. I am confused by her, spend a lot of time trying to figure her out, and I <em>adore</em> her. <br /><br />Anyway, tonight we attended the Long Beach State Alumni game. Before you can visualize our night, you have to understand that LB State athletics is in my blood- by association. I spent years and years of my childhood sitting in the bleachers of the Gold Mine and then the 'Mid back in the days when Men's and Women's basketball and Women's volleyball was a sell-out each game. My grandparents were and are active boosters, and my grandmother ended up working for the Athletic Department, so our family followed, and whether it was a school night or not, the Ramseys were there. I was laughing with my grandma tonight about how I would pray for no over time because doing homework in that crazy, loud atmosphere was impossible (but expected!). I was never an athlete, so I did not care much what was going on on that court and most times I was picking out the cutest boy in the crowd or running the bleachers with Alexis and Michael McDonald. Looking back now, I appreciate those years in attendance, because great friendships were made.<br />Tonight it was fun for me to watch players I'd watch play years ago and it was awesome to stare at Kate's face as she watched her favorites.<br />
My grandma- my Amie- is a fixture at LB State. Tonight for example, she was like a queen holding court as she sat in the stands, and people came to her one by one to say hello. My Amie is the most caring and kind person (can you tell how proud I am that she is my Amie?), and because of that she has always given the players the smile, tenderness and love of someone who cares about <em>them</em>, not just their play. In turn, players like Misty May and Danielle Scott (who lived with my Amie during a time while playing at LB State) care very much for my Amie.<br /><br />A date night with my Kate, the chance for her to finally meet Misty and also Danielle, and time to watch how much my Amie is admired by so many. <em>Such</em> a great night.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrt8uG5JDOLZXUSmLp1212Q9rXH2rD1k9-zFdO21qNh_vKjfirA3MRL7JxMWgmSo5Y1e7uXQ8lmdlHNXw0mssPMGQTIawMxX0GFwbeRFmho8w8SxfNK5oWWJiGYHNH4DTaIJViBGnXjvk/s1600/534.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrt8uG5JDOLZXUSmLp1212Q9rXH2rD1k9-zFdO21qNh_vKjfirA3MRL7JxMWgmSo5Y1e7uXQ8lmdlHNXw0mssPMGQTIawMxX0GFwbeRFmho8w8SxfNK5oWWJiGYHNH4DTaIJViBGnXjvk/s320/534.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First try at a picture....</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS82QzSqUi8SBkbQkzntg5ceU-8SwssFBaaTQK2DYV5oe_qgLlIO5m5RRFx0sofR7TKO5MeTy4ZinxGLzWeUILM6Bh2gQ2X7qI-qbra6HXG1wjOFpPRiCrZ-A1G0TjigSkJKpYWhk6Dwg/s1600/536.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS82QzSqUi8SBkbQkzntg5ceU-8SwssFBaaTQK2DYV5oe_qgLlIO5m5RRFx0sofR7TKO5MeTy4ZinxGLzWeUILM6Bh2gQ2X7qI-qbra6HXG1wjOFpPRiCrZ-A1G0TjigSkJKpYWhk6Dwg/s320/536.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kate's T-shirt, now signed by Misty and Danielle. We stood talking to Danielle in the parking lot<br />
for 10 minutes, but I totally forgot to get a picture. Bummer.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXrmyXtR7k4AlpWB1LdmPrq1qxmx3JMU7qTN3rN-aJLKTnJkx0X4Gkl-yOJHa3aFqv1p5bHWFm20KfIIf-DRSDwaRLIMjPr8rxSc9NJ8BRfq-VU3sI_GrTXdPz9b96ZLVcpxwf0p53bMM/s1600/misty.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXrmyXtR7k4AlpWB1LdmPrq1qxmx3JMU7qTN3rN-aJLKTnJkx0X4Gkl-yOJHa3aFqv1p5bHWFm20KfIIf-DRSDwaRLIMjPr8rxSc9NJ8BRfq-VU3sI_GrTXdPz9b96ZLVcpxwf0p53bMM/s320/misty.jpg" width="279" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">MUCH better. I saved my tears for the car, but seriously, watching my Kate meet someone she wants to be like when she grows up and considers a role model made me cry. <br />
Kate said her heart was beating different after talking to Misty...how cute is<em> that</em>?!</td></tr>
</tbody></table>
Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com1tag:blogger.com,1999:blog-4040789413205747540.post-11104238295002911272012-08-15T21:01:00.001-07:002012-08-15T21:17:17.448-07:00Liz Is In!!So much blogging to catch up on, but will keep this short tonight.
For those who are following Liz and praying, we had a breakthrough of sorts today....
Liz's original appointment with the Director of the Motility Center at Childrens Hospital Los Angeles was scheduled for a month from now. That is just way too far out especially now that her condition is worsening and the last-resort-drug is no longer an option. Liz's Pediatrician- my tiger, as I call her- called the CHLA doctor this morning and explained Liz's case and the urgency needed and.... we are in for Monday morning!!!
<br />
So exciting because we just want to get Liz's horrible impaction and motility issues figured out. She is so much worse than she is ever been that way. The films from Monday show that she is STILL just as impacted as she was a few weeks ago. Even after all of these cleanouts, she is impacted; something is not right and the GI team at Miller's is out of options at this point. Also, with the way her condition is progressing in that aspect, we<em> know</em> she'll end up back in the hospital. We were so torn on which hospital we'd take her to considering she isn't yet a patient of the CHLA motility doctor. Now though, we would know to take her to LA.
I cannot express how grateful I am for Dr Lee and for her mighty roar- she just would not accept making Liz wait and end up with an admittance at our hospital where there are no other options. She so badly wants this under control so that Liz at least has a shot at starting school (of course there is the immunity issue to deal with too in regards to school). Our eleven year old cannot start school in a diaper and it is craziness to keep putting her through a whole clean ot (including enemas) each week. Something has got to give.
So, Monday it is for CHLA and then Tuesday she has Hem/Onc here in Long Beach. <br />
Monday's labs show that she is still pretty anemic and her platelets are the lowest they've been in a long time. No wonder she is pale and bruising with petechiae. We hope those counts will look better on Tuesday.
<br />
We just keep chugging along.....Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com0tag:blogger.com,1999:blog-4040789413205747540.post-87939121601983053032012-08-11T22:13:00.003-07:002012-08-11T22:18:12.530-07:00Joy Comes In The MorningIt has been one of the hardest weeks I have <em>ever</em> had, and it just got worse as the days went on. Frustration mixed with serious fatigue gave way yesterday after learning of our friend's passing and I cried <em>all </em>day. Bubba losing his life saddens me deeply of course, but even more, my tears would not stop at the thought of my friend's broken heart as she aches. Any mother can only imagine the unspeakable pain Julie is suffering. <br />
I tried to hide my tears from the kids, but that was for not. Telling them about Bubba was difficult, especially for Elizabeth, but it gave way to a great talk. It is very sad that because of Liz's situation we have met and made friends with children who are very sick and my children know about things and deal with things that should come into their lives when they are older, but at the same time I can see how the exposure to pain, loss, and sadness is shaping parts of them for the good. My babies know that death can happen- even to children. My kids know that heaven awaits and that we will all be together again after death. Liz cried and said that she is so worried that Bubba will miss his mommy, and then quickly answered herself by saying "But he will be with God and that is safe."<br />
Tough, tough stuff, right? It is life though, however difficult and unfair and devastating. The kids are more compassionate and loving, and, ironic to some, they have a relationship with God that<em> is</em> made stronger as they are exposed to<em> such</em> hard things.<br />
<br />
So, today was a new day and there were less tears. Tomorrow Walter is off and I feel a mother's-heart- need to be close to him and the kids. I would love to get out of town for the day if Liz is up to it because I think we could use a break from this place : )<br />
<br />
The latest on Liz is frustrating. After deciding to go ahead with the new drug, then waiting ten days for our insurance company to authorize it after much fighting, paying a yucky amount of money for it, and then praying I made the right decision.... Liz took the first pill on Tuesday night and within 30 minutes started having burning in her chest. Over the time period of another hour the burning turned into pain, then chest tightening and some wheezing. She ended up in the ER for the adverse reaction. This reaction occurred in less than 2% of patients during clinical trials, and it can reoccur with subsequent usage but may get better over time. Because Liz is so little (smaller and younger than the over 18 years of age that the drug is approved for), her doctors do not feel it is safe to use it again.<br />
UGH!!<br />
So, we are out of options for now in terms of treating her motility issues. That is literally what her GI doc said, not just my opinion. She is scheduled to see the director of the motility center at CHLA, and we are hoping she will have more to offer. For now, Liz will visit Radiology on Monday to rule out partial obstruction. <br />
In addition, labs have been and will be done. Her GI was worried at how pale she looked yesterday, so we needed to check counts. Also, Liz has had retching almost every day for the past week and her nausea has increased over the last few weeks. A few months back, Liz had some awful liver numbers come back during routine liver function labs. The numbers were new to me, so didn't freak me out as much as they made her docs scurry. Repeat liver labs looked better, so we agreed to recheck in six months unless she presented in a way to give reason to repeat sooner. Her GI decided they should be done now; so for goodness sake, we are praying her liver looks fine from these labs.<br />
Her doctor ordered another medication to hopefully help with her nausea. We'll see about that.<br />
<br />
I voiced how frustrated I am; I can see this train getting ready to crash, and there is no way I know to stop it. Liz is following the same cycle of things escalating and then getting to the point of ending up admitted and all heck breaking loose. Gosh, it is tiring and difficult to keep "putting out all these fires" over and over with Liz's health. Things weren't like this before. A few years ago, it wasn't so hard for her, her body was not so broken.<br />
I also voiced how we all just want her to be able to go to school in September, but that she is so tired and getting so sick after days of doing simple and easy things...nothing compared to a full day of school. How in the world is she going to be able to do that?! Not to mention appointments that we are already scheduling for September. Missing class in Middle School is a big deal, and yet we have no choice on days we have to go Los Angeles for appointments. I am trying to remind myself to take one thing at a time, but I just want her to be able to have a normal school life, and instead we are going to need to rely on her 504 plan (a document that lays out accommodations to be made and work modification for school). <br />
<br />
Our prayer requests for the immediate are:<br />
* For Liz's counts to look good. I want great numbers on her liver labs, and I'll settle for stable white cell, neutrophil and platelets.<br />
* For her liver to look alright and not be a factor in any of this.<br />
* For there to be no visible partial obstruction<br />
*For her nausea and retching to get under control. It is upsetting and <em>extremely</em> painful for her when she retches; also, for her Fundoplication to stay in-tact, as each time she retches, she runs the risk of blowing that wrap (the knot that her stomach and esophagus are tied in is called a "wrap" or Fundo).<br />
* <em>PLEASE</em> pray for our friends the Presley family as they deal with their <em>deep</em> pain after losing their Collin (Bubba).<br />
<br />
<em>Thank you</em> for continuing to pray for Liz and encourage our family.<br />
{Weeping may endure in the night, but joy comes in the morning} Psalm 30:5Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com1tag:blogger.com,1999:blog-4040789413205747540.post-10190572002747369512012-08-10T10:17:00.001-07:002012-08-10T10:17:30.336-07:00BubbaToday is my Jackson's birthday and I will post about him tonight. This morning I come to you to ask for prayer for my friend and her amazing family.<br />Late last night, Bubba (Collin) Presley passed away unexpectedly in his sleep. Bubba had a contagious smile, amazing strength and a life that taught us all about perseverance and happiness.<br />
<br />
I wrote about Bubba's mommy, Julie, in the past and shared how I was always struck by her strength as she literally held Bubba up and cared for him with unwavering strength and a smile on her face.<br />Circumstance brought our friendship together, and our family has been touched and uplifted by knowing the Presleys.<br />
So many of you encourage and pray for my family, today please pray for Julie; Jason; Bubba's biggest cheerleader, sister and best friend Regan, and the rest of his family and friends.<br /><br />It is going to be so difficult to tell the kids, especially Elizabeth who knew Bubba most and considered him a friend and fellow little hero. We will have a dance party in the car - as Julie does with her loves- and we will watch buses go by at lunch as Bubba LOVED buses. Mostly, though, we will forever think of a great smile as a "Bubba smile" and we will remember him as a friend who touched our hearts and inspired us to be better no matter what.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGF-9Bgfq9nEsDXnO3Z23Joka1OUdrVXoDo1xBsq2z0GX2S72Tt6bq2Sosqa5IEjnKiqsIU3q5tPNqlNsUxWTszSxyv26_Se3GrMCrDQALEGHvOkCep3fxCGCryKdy9cmLM-T4u7Ry0uc/s1600/003.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGF-9Bgfq9nEsDXnO3Z23Joka1OUdrVXoDo1xBsq2z0GX2S72Tt6bq2Sosqa5IEjnKiqsIU3q5tPNqlNsUxWTszSxyv26_Se3GrMCrDQALEGHvOkCep3fxCGCryKdy9cmLM-T4u7Ry0uc/s320/003.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">July 4th is Bubba's birthday! This year was super fun Team Bubba party!!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGa2nTUJBhwzLCGr9b6hN6xTt8f60B1Z1zM1_hlSDZQ0Qnzp7v5rrwzmQv4iVh6p9riVqv3nta7uFKAH5KJEM0M5vRFEd7UwRy9tcMcO5pKnKxzzEp3SBdUrsLmizfB4u5gfWuEs8bMB4/s1600/julie.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGa2nTUJBhwzLCGr9b6hN6xTt8f60B1Z1zM1_hlSDZQ0Qnzp7v5rrwzmQv4iVh6p9riVqv3nta7uFKAH5KJEM0M5vRFEd7UwRy9tcMcO5pKnKxzzEp3SBdUrsLmizfB4u5gfWuEs8bMB4/s320/julie.jpg" width="267" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sweet friend Julie is such a warrior mom.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnuVJHyN0iDxiqZjzGshCVSqnaf6OW-LjOC38dv-QcODmP2y025W6h6AokxzXlSRv6MQ-oRbK3m2Bagd8Gq6RFJl0CzMyglGHGPXzobqznwVoYR77A6jXAwGa3EQ9L38JVFl3P9FygHHk/s1600/244.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnuVJHyN0iDxiqZjzGshCVSqnaf6OW-LjOC38dv-QcODmP2y025W6h6AokxzXlSRv6MQ-oRbK3m2Bagd8Gq6RFJl0CzMyglGHGPXzobqznwVoYR77A6jXAwGa3EQ9L38JVFl3P9FygHHk/s320/244.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liz and Bubba have many of the same doctors and it is always fun to see<br />
friends on hospital days.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_BhrR06tpG6VGQLNsS-1PQTqV5DCWsiNHMlyOfTDrO9eGxlKuRjlBvL5h1s88uqRG7XCRRBO726fTk92Uar0l0PU6vyfUcSdxZ279GOR5NspAIyJRvaVwiKhVkWj-6Qd0YhAW1GfOQVw/s1600/bubba.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_BhrR06tpG6VGQLNsS-1PQTqV5DCWsiNHMlyOfTDrO9eGxlKuRjlBvL5h1s88uqRG7XCRRBO726fTk92Uar0l0PU6vyfUcSdxZ279GOR5NspAIyJRvaVwiKhVkWj-6Qd0YhAW1GfOQVw/s1600/bubba.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The best Bubba smile. We will miss you, sweet boy.</td></tr>
</tbody></table>
<br />Allysonhttp://www.blogger.com/profile/08893441397852614178noreply@blogger.com1