Thursday, March 26, 2015

Discouragement & An Overwhelming Question of How

This week I got all the blood tests and stool test results in from the various doctors we've been seeing about Cora's latest irritability the last six weeks. The stool test was normal, blood test from the GI was normal, and the blood test from her allergist shows an allergy to milk, wheat, egg, and beef. I already knew about the milk but could still cook with it, I suspected the beef and never gave her too much, but the wheat and egg have thrown me for a curve ball.

Cora did the cognitive evaluation this week at the Guild School and although I haven't read the report yet, it shows that she tested low, especially in the emotional/social topics. I'm not sure what any of it means other than they will be starting a fourth therapy in April that will be Cognitive Intervention.

She did the cutest thing during the cognitive test. The teacher hid a bracelet under one of two wash cloths and switched the wash cloths around to see if Cora would follow it. She did and tried to put it on like a necklace but figured out that wasn't working. Then she discovered she could put this glittery bracelet on her hand, brought her shoulder up to her neck and wriggled her little body in the most feminine, look-at-me-I'm-so-pretty kind of way. It was absolutely darling! I wish I had it on video.

We met with Cora's nutritionist this afternoon who put Cora back on the gtube (she's been off of it for 3.5 months, we were half way there!) for water because she's been so dehydrated the last few months. The GI doctor wanted to switch her from Elecare Jr. to a Pediasure peptide, ultimately to get her weight back up. She hasn't gained weight since she's been off the gtube but since she's lost the last six weeks, she's started to put that weight back on. She's now on a 38-41 caloric density from the milk or shake.

So this week has been very busy with appointments every day and some days had two appointments. I'm tired, getting a cold, running on little sleep, and I'm not holding up very well today. In fact, all the realities hit me today and I'm still trying to process and analyze what this now means for Cora and I.

I'm pretty darn discouraged. Cora was progressing so well and at such hyper speeds that I thought for certain she was catching up to her peers and was well on her way to being normal. She'd been excelling with her pt, went off the gtube cold turkey with absolutely no problems at all, and I was beyond ecstatic for her. But now she's lost weight, determined that she's got four food allergies, is quite dehydrated, and her cognitive testing was low. It's pretty discouraging, I was on such a "high" for her for a while and so please with her progress. So we're back on the gtube and somehow I have to come up with an entire new menu and method of cooking - I'm very overwhelmed by this feat and I don't even know where to begin. I can't cook with any of these foods at all, she can't have a single trace of it in her diet. The main things she can't have are obvious but the little things make all the difference in taste; no mayo, ranch, butter, bread crumbs, certain seasonings, etc.

I feel like the ants from the movie A Bugs Life; they were all following order taking food to the pile for the colony when a big object (leaf) fell in the middle of the route and the ants didn't know how to get over or around the leaf. I don't know how to get over or around these next obstacles with Cora. I feel like I'm in a state of shock, I'm just numb and my brain and heart don't know how to work again. But on the other hand I know that everyone in life has their own trials and burdens. The Lord doesn't take those burdens away, but he can make them light when we come unto Him.

Matthew 11: 28 Come unto me, all ye that labour and are heavy laden, and I will give you rest.
 29 Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.
 30 For my yoke is easy, and my burden is light.

I always try to remember and fall back on the scripture, "Be still, and know that I am God." But for some reason I need more comfort and hope than that this time around. I do still have faith and know that Cora is in the Lord's hands, I just feel inadequate and so small. Cora needs someone bigger and better than me and I feel like I can't give her what she needs. I just don't know where to turn or how to begin. 

April and May are already looking pretty hairy; we've got neurologist, ENT, pulmonologist, ophthalmologist, allergist, GI, neurosurgeon, nutritionist, gastric emptying study, and a swallow study, all in the mix of the usual therapies. Needless to say, I'm already anxious for our summer vacation in July!

Overall, she's still doing really well and I have absolutely no room to complain. A lot of children have it way worse than Cora. She didn't lose a limb or need surgery, she just has these food allergies which is no small things considering she eats 5-6 times a day. Ugh, I don't even know why I'm complaining because we are so blessed! I guess this rant is my way of analyzing and accepting our new reality. I should take the bull by the horns but it feels like I don't have any horns to hold onto on this particular ride. And so I don't know what to do other than fall to my knees, and plead and beg for divine guidance from one parent to another. He is the ultimate parent and knows Cora better than I.


Bonnie and Kempton Cox said...

Wow, that is all so crazy! I am so sorry that she has so many allergies, but at least they were able to figure it out? I don't know if this is any consolation, but there are actually a lot of options nowadays. They have all kinds of things like dairy and egg free mayo and ranch, there are dairy free chocolate chips, etc. It will take a lot of inspiration and creativity, but you can do it! You're doing a great job with Cora, and even with a bit of a setback, she has still made amazing progress. You really are doing a great job with her. Good for you. :)

Stephanie said...

I'm so sorry. I can't imagine the stress you're under. I Pray that things will get easier for you!