Saturday, May 13, 2017

A week full of news

Do you ever have weeks on end where nothing new happens and then everything happens at once? This past week brought a lot of good news for us and a little bit of not-so-good news. On the Good list, we've FINALLY gotten both boys enrolled in the school programs that we've been waiting on!

Brandtley has been going to his trial kindergarten afternoons over the past two weeks.  We knew he had received a full-time place starting in August for the next school year.  This kindergarten has 3 rooms of 20+ kids each and every May, they invite the new kids to come play in the afternoons while the teachers observe and then they assign the kids to each of the 3 classes based on the teachers' assessment of personality, friendships, etc. Thursday was the last day of the assessment and when Matthew went to pick him up, the director told him that they have accepted Brandtley to start in June instead of August! He is SO excited!  He's had a great time playing there and making new friends over the past two weeks!

Earlier in the week, I sought out the OGS director at Jackson's school to ask when next year's slots would be assigned. (OGS is the afternoon program at the school.  He currently is finished with school at 11:45 or 12:45 every day while most of the other kids stay and play or do activities. He very much wants to go to OGS and we do too so that he can make friends and develop his conversational language skills through play & interaction.)  This teacher only speaks to me in German and very quickly, but I am fairly certain that she said he will be given a slot for next year and that we will be notified officially via letter in the next two weeks. YAY!

When Jackson first started school, we told him that we needed to continue asking her and telling her how much he wants to go to OGS. He really took this to heart and continues to ask her every time he sees her...which can be daily.  As he put it, very simply and in a very German manner, "She will say no until she says yes." And yes, she did. :)

Also on the good list, Jackson definitely does not have Celiac. Both boys had blood tests performed two weeks ago to test for inflammation markers, and Jackson's came back fully in the clear.

Unfortunately, Brandtley's results did not come back so great.  This blood test is routinely performed 6 months after a Celiac diagnosis to ensure that the gluten free diet is working and his body is healing from inflammation.  The inflammation markers are supposed to be below "10".  Brandtley's registered at 33. (as a reference, Jackson was at 0.2).  However, six months ago Brandtley was at 135.  So, compared to that he has improved greatly and may just be taking longer to level out & heal.

Due to the improvement so far, the doctor said that she feels it best to test again in 3 months.  If he continues to improve at this rate, then he won't need to see the specialist.  If not, then we will go to the pediatric GI specialist at the hospital to troubleshoot whether there is a secondary cause (such as corn, soy, or other protein triggers), or if somehow he is still consuming gluten. We realllllllllly want to avoid this.

I've struggled a lot this week with frustration and worry.  It feels like we're already doing everything we can for his diet, so how can we do more??? It doesn't help that he hasn't grown again in nearly 2 months.  I don't know if that's a sign of gluten contamination or just him being a normal kid who grows in spurts.  But then what if he continues not to grow and goes to German first grade next year looking like a 4 year old?  I know God has a perfect plan for his life, but I'm praying it includes health and growth. And that I can trust that with peace while "trying harder" to help him heal.

To end on a good note, Brandtley has graduated to a bigger bike! It's still slightly too big for him, but his little bike's chain kept falling off so we pulled out Jackson's old bike to see if B could manage it. He rides well, and is doing great! (Even though he has to jump off every time he comes to a stop!)  He's able to go much faster on this one and is SO proud of himself!

1 comment:

  1. I feel for you on the gluten :( We've been dealing with a gluten sensitivity since we switched from a more asian diet to the land of bread...and it's been hard. I've thought often that celiacs would be SO difficult...b/c we're just in a sensitivity and it's kind of a pain:( Keep praying! Laura