Long overdue update

Yeah I have been gone awhile. I have spent 6 days a week at the new house working and just haven't felt the energy to post. We should be moving very very soon, the house is really starting to look great.

Lucy had her follow up appointment with the GI today. I will say right off the bat very little was accomplished in terms of solidifying a cause for Lucy's issues and deciding where to go from here. We decided to hold off on the g-tube since Lucy's linear(height) growth has remained on somewhat of a curve. We are going to continue with height and weight checks every 2 weeks in order to establish her NEW curve and then review the situation in 3 months.

At the moment Dr G thinks that Lucy has a "motility" problem- her stomach is just not emptying fast enough and its to a point that its causing a problem. Testing for a motility problem would involve yet another endoscopy and placement of a probe into her stomach, so for now we will hold out in the hopes that Lucy will not continue to deteriorate. If at the end of 3 months Lucy has failed to improve then we will consider testing and then probably place a GJ tube(tube that will pump formula below her stomach).

The big question on every one's mind is, what is causing this motility problem? Lucy's scope didn't reveal enough inflammation to have caused this issue, so Dr G suspects that this is simply the way her stomach functions. He brought up the possibility that Lucy could have a Mitochondrial Disorder. Dr G even considered getting Lucy started on the "mito cocktail" of supplements a child with a mitochondrial disorder would need, but safely assumed she would not be able to tolerate such treatment.

Towards the end of our visit we discussed the issues Lucy has been having with headaches. He was quite concerned about it because the anemia she deals with is not severe enough to cause these headaches. He was suggesting we see the new headache clinic at the hospital and have the neuro specialist there give his take on the possibility of a mito disorder and get the ball rolling towards diagnosis.

I am not exactly sure of how I feel about it all. Mitochondrial disorder can be a scary thing, its something that little is known about and can also be degenerative. Testing is long and arduous. I don't know if I am eager to pursue a diagnosis and all the testing it requires if its not something ALL of our doctors agree upon. So the first thing I am likely to do is speak to our pediatrician about it. Our pediatrician is usually right on target and very practical so I trust her words the most out of all our doctors.

As always, thank you for checking in on Lu. Bare with us during the move, once we are in and settled I promise to post more regularly!

Update

I figured I would post really quick. The next few days should be VERY busy with a three day weekend coming up. The contractors have finished their work on the new house so all that's left are the projects we need to finish- dump runs, painting, cleaning, and fixing odd and ends. We are going to try and use every moment we can to get the work done. We've been at this project since October technically and its time to stick a fork in it I think!

I ended up running out of Lucy's iron. I have to order it from a special lab and their shipping always takes light years longer than I would expect so we ran out before her new batch arrived. In the time she was without her iron Lucy didn't vomit once. Sooooo now I am not sure what to do while I wait for her GI appointment on the 15th. I started her back up on about 1/2 the dose she actually needs yesterday, but I doubt it will be enough to get her out of the anemia. She still looks really pale so I would be surprised if her blood work in January doesn't reveal any anemia.

That's all for now! Thanks for checking in!

Christmas

So I finally have a moment to sit down since Christmas. It was wonderful but exhausting!

We definitely had an amazing holiday. We were blessed in far more ways than I can even count this past month and its hard to take in. I had anticipated this year would be a pretty horrible Christmas with money being so tight, a massive project on our new house going on, and trying to sell our current house all in the midst of Lucy's health issues- but I was wrong. Instead we were blessed with so much family time, thoughtfulness, and some extremely generous gifts that seemed to come up unexpectedly out of surprise. Zach and I have nothing left to do but sit back in awe and feel so grateful. Even in the hardest of times we can only see so clearly how truly lucky we are and be deeply amazed at the generosity of our loved ones. There is no Christmas gift better than that.

To all of our family and friends- Thank you all so much for going so far out of your way to make this year so very special. Thank you all so much for the date nights, outings, gifts, laughs, hugs, stories, and smiles. You have blessed us in a time we needed it the most and it certainly did not go unnoticed. We deeply appreciate everything you have done.

*I will post up some holiday pics when I have the chance. We received a new laptop and I don't have my photo software uploaded just yet!

Lucy has broken into a routine of casually projectile vomiting just once a day, pretty much everyday. She runs around, playing, and then suddenly stops, runs to the sink, vomits, and then goes back to playing. Its a bit strange. Shes been having mild stomach pain and some funky diapers so I am unsure what the exact problem is. It could be the iron supplement, however it strictly contains elemental iron and no additives so if it is in fact the iron then an alternative treatment will have to be figured out to treat her anemia. Then again, it may very well not be the iron. Since removing the lollipops Lucy has gone back to trying to put everything under the sun in her mouth. I am leaning more towards the iron as our culprit because the longer she remains on it the more consistent her symptoms become. Time will tell us what the answer is here.
Our next GI appointment is in roughly 3 weeks which will hopefully be enough time for me to figure out what our issue is or to at least get an idea of what our issue is. If its the iron we need to be totally positive because if she remains anemic she will likely need iron injections to get up where she needs to be.
Thank you for checking in on Lucy!

The perfect holiday picture...

Thats the closest I could get to a picture perfect photo of the kids in front of our Christmas tree. Enjoy.

Happy Birthday, Lucy!!!

Tomorrow, when Lucy gets out of bed, she will be 3!!! That seems so grown up. I guess I will finally have to stop referring to her as "The Baby" and telling Zachary that he needs to be patient with Lu's antics because shes a baby. I will have to find another excuse to explain this precocious diva's misbehavior!

This year has been a roller coaster, as has been the previous years. We have had periods of running on high that were a blessing and we have had clear periods of running on low(which is where we have been the last few months). We've seen some major improvements with Lucy's dermatographism and environmental reactions this year, which is a huge gift. But as it stands now we see nothing but a decline in her GI health. I have complete faith that she will turn around and get back on track, but having patience during the wait is a challenge when your child is losing weight.

I wonder exactly what this year will bring. How long will things continue to decline and just how good will things get once she pulls out? I just never know what God has in store for us with each year. When I was pregnant with Lucy I never dreamed that anything at all could be wrong with her. Heck, even when she started vomiting in the nursery after being born I still never thought something could be wrong with my baby- after all, other people have babies with problems, not mine.


Life with Lucy has truly been a learning experience for us all in so many many ways and I will never take that for granted. I will never take my little girl for granted. With each passing day I see my little girl as more and more of an amazing miracle. I am so very proud to be her mother.


Every time someone says that I do such a great job as a mother I simply think, "Its this child. Shes doing a great job." Shes a fighter. She doesn't wallow, complain, or pout. She gets up everyday and plays like any other kid despite having a case of the "stomach flu", despite being deprived of food of any kind, despite the social isolation. She never gives up, quits, or gives out on me. She has a strength that I admire.


As an infant all of her days, weeks, and months were a blur to me. Everyday was the same monotonous drone of watching my baby suffer in agony with no cure in sight. Feeding my daughter was enough to bring me to tears on any given day. She would curl her precious lips around her bottle, breath rapidly, then cry out in pain with a whimper that ripped my heart out. During her feedings the most I could get into her was an ounce at a time before she would begin to choke, gag, and vomit. But an hour later she was always willing to try again, and every hour after that she would try again and again and again in order to get the nutrition that her body so desperately needed. So that is what we did, feed around the clock. Miraculously Lucy avoided a g-tube when the doctors couldn't hold any optimism at all that she could avoid it.

I know that no matter what comes Lucy's way, she will work harder than I can imagine to overcome it- shes been doing it since birth. I have no idea what this next year will bring for Lucy. I have no idea exactly what I will post about on her 4th birthday. I know that at every birthday I post that I am amazed by my child, and I predict that next year I will post the same because I am truly amazed everyday by my daughter and the many gifts she has brought to our life.

A general update

Lu is hanging in there. I think we've established a new not-improved normal for her. She had another episode of projectile vomiting tonight and was back to filling diapers with toxicity. I was hopeful we were moving in the right direction after we had a few running days in a row of feeling good, but over the last couple days we are back at square one. I wont completely give up hope that this will improve because with Lucy you should always expect the unexpected. Her next GI appointment is scheduled for January 15th and unless something dramatically changes in the weight department, arrangements for a G-tube will likely be arranged.

Lucy's third birthday is coming up this Friday (as is our 7th wedding anniversary). I cant believe my tiny baby girl is going to be 3!

I can read!

Zachary is reading pretty well right now. I am proud for two reasons- 1.) Hes my son and when your baby starts reading any parent would be proud, and 2.) I taught him how. Its a great feeling to see success with our homeschooling.

Of course, now we cant spell out our Christmas present discussions anymore. I am just so surprised at how fast Zachary picks up on all this stuff. He learns so fast and easily. I selected teaching materials for this year with the intent to review Kindergarten. No, its not that I presumed my son was stupid, its just that I assumed with his obvious disabilities that he would be learning impaired and that those impairments would put him behind. I expected the homeschooling process to be a slow and trying one. Instead, I think I am going to have to buy an entirely new curriculum in the new year because hes just way beyond the material I have. Hes bored and I end up having to coerce him into school with the threat of video game loss over his head. He breezes through our workload in no time flat and consistently craves more focus on reading, science, and social studies.

Zachary definitely struggles in some areas. His ADD makes his ability to focus a constant challenge. I have to stand right over top of him most of the day and help divert his attention back to his work. I would say he only has the ability to focus on anything for about 2 uninterrupted minutes, which tries both his and my patience through the day. He also lags in math. His strongest points are his handwriting, science, and reading. His handwriting is really something to see. Last year his teacher said Zachary was writing at a 3rd grade level- that his dexterity skills were WAY above his age level. I don't know if hes at a 3rd grade level(I have no idea what age appropriate handwriting is) but his handwriting is very very nice!

Homeschooling is definitely nothing I had expected it to be, but even on the days we struggle I absolutely love it. I love teaching my kids new things, seeing how they learn, and being right alongside them while they learn. I just cant even describe the way it changes a parent's relationship with their child to homeschool. I cannot foresee ever regretting the decision to homeschool my children.
*edited to add- yes! This WAS a shameless brag! Ha! I just patted myself on the back!

Thanksgiving Pictures

A little late I know:

Too fast and too slow

Lu is continuing to idle in a state that leaves me cautious. Shes definitely not digesting well and its definitely making her uncomfortable. She woke up from her nap today with a stomach so full of air that she looked pregnant. It was obviously uncomfortable for her. I noticed she kept pushing her stomach into the edge of table tops and onto the edge of the stairs to put pressure on her stomach. She also had a case of diarrhea all day on Sunday and it seemed to continue right on into today.

I have no idea what the source of the problem is. Things seem to take entirely too long to go out of her stomach, but once beyond that, things move too fast through the rest of her GI tract. Its confusing that's for sure.

I am worried that this could possibly be caused by the iron supplements Lucy recently started. I spent quite a bit of time finding the best elemental source of iron I could that didn't contain ANY additives so I cant understand why she would react to it if she is. And if indeed she is reacting to it this presents a new problem with correcting her anemia.

For now we will keep on keepin' on and hope that Lucy's system works it out- its been known to happen. I will give her a few more days and then I will call her GI to get some advice.