Our Quiverfull - doctor visit update

Oct. 15, 2007

doctor visit update

Boy, have I been lax in updating. It's been partly because we have been busy with happy things, like William's 13th birthday Saturday! I've also needed to really focus my time on getting back into a good routine with the children, homeschooling, household, etc. Jeff has been working some nights so it has been harder to update once things do finally get quiet. On top of that, Noah just plain feels bad and wants to be stuck to me all of the time. I don't mind the snuggles LOL but again, it makes it harder to update at all.

We were supposed to see the nephrologist (kidney doctor) and the GI doctor in Greenville today, but the GI doctor had to cancel because he is sick. Please pray that it is nothing serious. We rescheduled with him for next Monday. We didn't get any good answers with the nephrologist - of course, we have kind of come to expect that as Noah seems to mystify most doctors. His blood pressure is usually high, and now and then it is horribly high or perfectly normal. It was perfect today, but it was obvious from his chart that it is generally a problem. There does not appear to be any sort of problem with his kidneys at all, so we can't attribute the blood pressure or the anemia to that. I can't tell you how much we wish that sometimes we would find something "fixable" like a kidney problem. Even surgery that could fix the problem is better than knowing we can't do anything. The doctor is reluctant to medicate Noah because he does have such a variation in blood pressures and does have some normal readings. Anything that brought the high ones down could take the low ones too low.

Since Noah is seeing his cardiologist next week, we are holding off on making a decision about his blood pressure. If his echo shows ANY signs that his hypertension is affecting his heart, then we have no choice but to medicate. If his heart looks great, then the nephrologist and Jeff and I will have to decide whether to medicate or not.

There are also no good answers on the anemia issue. He has always had a balanced diet of either formula via g-tube or TPN, so he "shouldn't" be iron deficient - - -but he is. He is having some specific iron and b-vitamin related labs drawn tomorrow to really assess where he stands, then again we will just have to make some decisions. Some children with mitochondrial defects tend to stay deficient in certain nutrients no matter how much they get. It is possible that we could give him iron infusions via his Broviac when his TPN is turned off. This might help the iron and therefore the anemia (and therefore maybe help him feel better). On the other hand, some research seems to indicate that iron supplimentation is dangerous for children with mitochondrial defects even though it safe for other children. (Remember, we don't have a mitochondrial diagnosis yet, but he is being treated as though he has a positive diagnosis because that is the one thing left that would seem to explain his symptoms.) If we don't treat him, and his hemoglobin continues to drop, he will end up needing a transfusion. Obviously none of these are easy or straightforward issues to deal with. The only clear cut thing the doctor could say was that Noah is obviously having a great deal of trouble with his autonomic nervous system, which controls many automatic body functions like temperature, blood pressure, etc. The lack of a clear cause for these newer problems seems to leave disease progression as the only answer.

Like I said earlier, right now Noah just plain doesn't feel good. He isn't really fussy, but we are having to work on getting any smiles. Usually on Sundays I end up taking him into the nursery and sitting with him once he has had enough and starts making too much noise to stay in the service. The nursery workers keep a box of his favorite toys set aside and they clean them every week for him. He LOVES that box of toys and gets excited when he sees the nursery door. This Sunday he just sat on my lap, mostly with his head on my shoulder, and had no interest in playing at all. He quietly watched his little friends, but wouldn't respond to any of them with smiles or gestures. It was sad to see. I don't know if it is the anemia, which is definitely significant enough to make him feel yucky, or the fact that he is cutting four molars (!!), or something else altogether.

Noah is still not getting any feeding via his g-tube at all. He is allowed to eat tiny bits of table food if he wants to do so. One blog reader asked about this. Noah is physically capable of eating very tiny bits of food that will sort of dissolve in his mouth. Things like some cereals, little natural cheese or veggie puffs, even teeny bits of Mommy's waffles are all OK. He can't handle foods that need real chewing such as meats, fresh fruits, etc., and he doesn't want food that needs to be spoonfed such as yogurt. Until very recently he was passionately averse to any sort of food in his mouth, but he has decided that it is a good thing now. This is ONLY a social and developmental thing for Noah. In no way is he able to consume enough to actually add real calories to his diet or to allow us to add better nutrition to his diet. In fact, everything he eats generally comes out looking just about like how it looked going in. (Sorry!) I say in SO much LOVE - we are very aware of the importance of nutrition, and would love to get to the point that we could impact Noah's health through the things he eats and drinks, but we can't right now, so please don't email me and tell me that he needs to eat/drink XYZ for better health. Believe me, when he is cabable of doing so, we will be asking for and welcoming all sorts of good ideas! He isn't digesting what he eats, and the amount he can take is soooo small. At lunch he had one and a half crackers broken into teensy bits, and more than half of that ended up on the floor. If he is given free, all day access to his cup of water, he might take in two tablespoons or so total all day. This is a just a great social and fun thing that he enjoys doing, and that is teaching him about food and flavors to keep his mind open about eating.

My time at the computer is running out fast, but I just wanted to quickly share how thankful I am for William and his 13th birthday. We'll maybe share in more detail another time, but William was diagnosed with autism as a very small child. He was severly impaired, and at five years of age he had no function speech, didn't recognize Jeff or I, slept in a crib, and wore diapers. He injured himself and spent hours per day screaming, throwing himself off of furniture and into walls, etc. We were told when he was tiny that he would never, ever speak and that we should "put him in a home." Jeff's immediate response was that God already had put him in a home - OURS! When William was five we were blessed to be able to start him in a therapy program that involved 45 - 60 hours per week of one on one therapy here in our home. He no longer tests on the autism spectrum at all and is a wonderful, funny, smart, loving young man. I cannot begin to imagine what we and the world would have lost had we given up on the difficult little boy that he used to be, and I cannot begin to express the wonder and gratitude that Jeff and I feel every single day when we look at him. There are no words to describe what is like when the "boy who would never talk" gets up out of bed and seeks me out to hug me one more time and tell me how much he loves me and how he has been in bed praying for me.

We had a big lasagna, salad, and birthday cake dinner with all of our local family members on Saturday, then went to a nearby National Park for a candlelight tour. This park is the site of a lot of pre-Revolutionary War history, and there are a lot of events with costumed re-enactors. We have re-enacted there in the past, but couldn't this year because of Noah. It was a treat to for the annual candlelight tour to fall on William's birthday. There was a long, candle-lit walk through the woods, and every so often along the walk there were groups of re-enactors portraying various scenes from history. The weather was lovely and it was a great way to end the day.

Mr. Noah is calling, so I need to go. We would so appreciate any prayers for him to just plain feel better, and to start sleeping better. He sleeps a lot, but since we got home he wakes up in a panic if I put him down. I would kinda like my side of the bed back to myself for at least part of the night, and while I don't mind holding him during naps (he will be too big all to soon!), there are also times that it would be great if I could use his nap time to just get a lot done. I know we will move past this phase - let's just really, really pray that it is sooner rather than later! :-)

Love,

Kate

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Comments

Oct. 15, 2007 - Untitled Comment

Posted by Anonymous

I am SOOO glad you posted.. I was really beginning to get worried but knew in my heart that you would post as soon as you could. I will pray, as always for Noah and for answers for your family as to his illness. Happy Birthday to your son and congratulations on his ability to come out of the autism. I too have a daughter who is autistic (diagnosed at 18 months old and is now 6). She is also one of the lucky, or should I say BLESSED ones that the autism is almost undetectable at this time. I do, however have a very dear friend with a 4 year old son that needs in home behavioral therapy desperately but can not afford to do so. I pray all the time that she get the help she needs. Anyhow, I hope you are having some fun with your family while trying to restore the "regular schedule". Take Care and God Bless Jessica in FL.