The Schindewolf Squad: Update

This has been a busy week of appointments. Wednesday we went to see our surgeon for a follow up on tuck's g-button. All looked good, except the doctor wants us to continue with a topical steroid to help the sight look even better. It's still not "normal" looking but looks 100% better to us:) all in all a good appointment.

Thursday we went back up for our appointment with our GI. I had an arsenal of questions as usual;) our GI is amazing, so helpful and genuinely cares about tucker. Some good news we got was that it appears tucker has grow some length wise, which is huge for us. He is starting a new curve. She said only time will tell if it is a fluke, if it's due to better nutrition or if it is due to the steroid we have been administering in his g-tube once a day to help with the unknown inflammation. I am praying it is not a fluke! We need some good news:) another bit of good news is that since tucker has been eating so well and gaining weight very well, we are going to stop feeing him through his tube at night and just let him proceed on a normal diet. I am going to take him in for a weight check in 2 weeks to make sure he is at least maintaining his weight, which I'm confident he will:) God is so good!! We will obviously be leaving his button in for now, especially since we don't know what the underlying cause is and since we do use it to administer all his medications too. We go back in 4 weeks at which time she will likely schedule a repeat endoscopy to check and see if the steroid is helping with the inflammation or not.

I finally spoke with our immunologist yesterday evening as well. It was a lot of information and a bit confusing but I will try my best to condense it. Basically they got back some results on 2 genes. They came back normal. Apparently these are the most common genes that this disease shows up on. So now they are testing a rarer set of genes to check. So that means 6 more weeks of waiting:( however, the doctor explained that even if those come back normal she will not be convinced. There is something called pseudo genes that are present on the genes that came back normal. Sometimes the normal result can be from those and not the actual gene. This is a really confusing concept, but that is what I understood it to be. So if we get another normal result she is going to send a blood sample to an expert in deciphering the two at the national institute of health in Washington. He is a mentor of hers and a friend and is willing to do this for her. If that is normal then she will do a few more rare genetics tests. She said at that point we will be into the extremely rare area and it will take time. She also wants us to come into the clinic when the geneticist is in. Once a month they join forces and see patients who may be difficult cases and such. She thinks it could be helpful for us. I told her we are willing to do whatever it takes and that I am happy to see a change in him, he is taking steps, eating, talking more, more energetic, healthy, etc. however, I know that is because of all the medications, steroids and iron infusions. I have a feeling if we took him off of all of those he would slip back again, she agreed. She said her gut is telling her there is definitely something going on and she is going to expend every effort to try and figure it out. Basically this unknown severe inflammation is causing lots of other problems that we are treating, but until we can figure out the cause and treat it, we will have to continue putting out these little fires. The analogy our hematologist used in the beginning is a good summary: basically it's like there is a house fire and we cannot find the main source, so until then we have to keep extinguishing these little fires that pop up until we find the main source and extinguish it. At that point all the little fires will dissipate as well. I know God is the ultimate healer, but like I've said before it is hard to put all my trust in Him when it comes to my child's health. But I am trying and I know all these improvements have come from Him. I also know He has put all these doctors in our path and is leading them as well. I cannot express my frustration into words but I know that I must be patient and trust in HIS PLAN. Please continue to pray for tucker and our doctors.
Sorry for the lengthy post, just wanted to document the information and for those who are interested.

Next week we go to genetics for the first time since March and are curious to see how they will weigh in. The following week we go back to hematology and see when/if we will have to have another iron infusion. I will update with any new information. Thank you again for all your thoughts and prayers:)

Hope all have a fun, safe and blessed weekend:)