Today we had an appointment with a Pediatric GI specialist. JJ has struggled with reflux since birth off and on, but it has been worsening the past 18 months (since he is actually eating regularly!) We decided to take him in to a specialist and see what may be causing it and try to fix it. We are wondering if it is related to the apraxia. We are also wondering how much damage is being caused and how to fix the damage or stop damage from starting.
I had prayed for specific things:
That the specialist would take the time to hear what the issues really are: The specialist was wonderful. He took a lot of time to listen to me, and ask questions that clearly showed he was trying to assimilate the information and work toward an accurate diagnosis and the best help for JJ.
That he would make an accurate diagnosis: There is no doubt that JJ has reflux. The problem is what is causing it. So...we have to go back in 3 weeks and have an upper and lower scope done where pictures will be taken of JJ from his mouth on through - along with biopsies taken to see how much damage has been caused already from the reflux, if there is a structural problem, and if there is an infection/disease/inflammation problem. So many "possible causes" were thrown out that have me terrified that I am not letting myself even go there yet. I am trying to just think about it as a "rule out" procedure.
That he would suggest a plan relevant for Jonathan (not just a cookie cutter approach): The specialist sees 3 areas that need to be assessed/evaluated before a final diagnosis(or more) can be made.
1. The problems are related to the reflux (his specialty),
2. The apraxia (so we have to go see a pediatric neurologist in May for a more formal and comprehensive evaluation and diagnosis from him of the apraxia and what all of the "systems" are that are affected by the apraxia (as it is not just his speech), and
3. a formal "feeding study" where an OT, PT, and SLP watch him eat and see what the feeding issues are.
The specialist was concerned that I still have to feed JJ 90% of the time as he won't feed himself otherwise and then won't gain weight. We finally have JJ gaining weight but he is not eating "like a 5 year old should" both with quantity and feeding himself and not eating until the afternoons. He just opened up so many "possibilities" of what is wrong that I have not considered that my head is spinning. So...all of that is very overwhelming but I completely agree with the reasons he thinks all three areas need to be assessed.
That whatever the problem is it can be fixed and without pain for JJ: Today JJ had nothing invasive done and he was very happy. He knows that he has to have a scope next time though. They will let me hold him next time while the meds take effect to put him under for procedure. Then they will take him and I will see him again after he is woke up. I am already a wreck just considering it. Blech!
That JJ would be willing to answer any necessary questions, would not be scared, doesn't have any permanent damage already, and would be cooperative: JJ did great in the appointment and was very brave. After we got out he kept saying "I was so brave!" (although it took me awhile to figure out he was saying "brave" lol!) Of course, we won't know about any current damage until after the scope is done.
So, God did answer our prayers today. Thank you for those of you who have prayed:)
It was a very hard appointment for me and I could barely keep it together emotionally afterwards. I keep thinking that we should have done this a long time ago. It is just too much information for me to assimilate about processes that I just do not understand. I am overwhelmed with feeling out of control. I have fear that they will find something bigger is wrong or that what we have been doing has been wrong. I am beating myself up that I have attempted to "normalize" his issues rather than aggressively seek consultation before now. The specialist was very kind, but it was clear that JJ is not developmentally on track on so many levels and he thinks we should have been in before now. I am emotionally overwhelmed but, like everything else that happens here, I will eventually just assimilate it as the "new normal." It is appointments like this that make me feel utterly inadequate to have all of these special needs that we deal with. The learning curve is so steep to understand the new issues that arise and it stretches me way beyond my comfort zone and makes me fear so many unknowns. Then I beat myself up because it could be so much worse and I need to just be happy it isn't life threatening.
I have been reading about Joshua and trying to just trust in what I know that God told Joshua specifically, but imagine that He has the same message to all who He calls to something that stretches them:
Dt 31:7b Be strong and courageous
Dt. 31:8 It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.
Josh 1:6a Be strong and courageous
Josh 1:7a Only be strong and courageous
Josh 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
On and on we are told it as a command. He answered our prayers today. He has the final outcome in hand as well but I have a feeling He my sanctification is in the process and not the outcome (I hate it when that happens!!). I just need a little time to regain my footing and new normal. JJ is still our sweet JJ no matter what these diagnoses are, no matter what the interventions are, no matter if he is developmentally on track or not. God has the control, I do not, and today God is probably sitting back laughing at me saying, "one day you will finally consistently get it that you are not the one in control woman! Trust me!"
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