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.

Wednesday, March 18, 2015

The Battle Continues

For the past five weeks Cora has been really fussy and irritable. At first I thought it was a cold or teething or a flu. But it hasn’t gone away. It’s also not consistent. Sometimes she’ll have a low grade fever, cough, no appetite, trouble sleeping, diarrhea, and scream for hours on end. Other times she’ll eat more than Kimball, have normal diapers, sleep great, no fever, no symptoms. She now hates bathing and will scream bloody murder whenever she's in the tub. Strange I know, she used to LOVE them. I know that something is wrong I just don’t know what. Last week she had a really bad rash in her diaper area. One day here and there she’ll act completely normal. I’ve taken her to a few different doctors, the ER, and to an urgent care center. I have no answers at all, nobody can tell me what is wrong!

But I know that something is up. This isn’t the typical always happy, always smiling girl. Last week I called her pediatrician and he wants to do a stool sample to run a few different tests. I called her nutritionist last week and come to find out Cora has lost 20% of her body weight and hasn’t weighed this little since November. She’s quite concerned about her weight and hydration so I’ve increased Cora’s milk caloric density from 26 to 30 and will eventually work up to 40 calories to get some weight back on her. Even a few friends and her therapists mentioned how thin she’s looking.

What I do know is what I’ve been saying all along: it’s something with her gut. I can’t pinpoint it but I know it has to do with her digestive system in some way or another. Out of desperation I started her on a gluten free diet on Sunday, and would you know her diarrhea has completely cleared up. But going gluten free didn’t help the fussiness so I know there’s something more than just that.

You know the phrase, “The squeaky wheel gets the grease.” I’m an awesome squeaky wheel when I have to be. And after being refused and refused for earlier openings to her allergist and GI doctor, I finally got in for tomorrow morning and Monday morning. 

I’m really frustrated. I feel completely defeated. I feel like I’ve failed again as a mom because for five agonizing weeks, Cora is still in discomfort and pain and I don’t know how to give her relief! Mothers are supposed to be nurturing and protecting and I don’t know how to give that to her. She’s had a few blessings and I know it’s all in the Lord’s hands, I just wish I could administer the healing that she needs to enjoy life again. And it’s getting to my sanity a little bit too, I guess I can admit that. The fussiness and crying is hard to endure when I know there’s no end in sight. She doesn’t calm down when I or anybody holds her……..sigh………I don’t know what to do…………besides tell myself, ”Be still, and know that I am God.”

These blurry pictures are just for my record keeping: behold the purple hands and feet. Right below the knee you can see her leg start to turn colors and become more purple the further down you get. The texture of the skin also changes; it's more dry, wrinkly, and rough.

Lance, The Boss

The word is finally out, Lance quit his job as manager of Ball & Dodd Funeral Home and is starting his own removal company! We have prayed about and discussed this together for several months and decided to do it. You only live once and if you never try, you’ll never know. It’s also a big factor into us buying this new house, it has a three car garage and no alley. Everything has fallen into place as it should and we are so excited! Lance’s last day was Friday and I think he was a bit emotional about it, it is a big risk to take especially with a young family and just signing our life away on a mortgage. 

I’m absolutely confident in him and his abilities to run this company successfully (and if something goes awry then Caryn would hire him back, she loves him) and I’ve never met someone more passionate about their work than Lance. He genuinely cares for the families he works with and has never been concerned about the money aspect, all he wants is to help families in their grief. He’s incredibly knowledgeable about the funeral industry and has had really great experience in all fields of it. 

Lance has already contracted with Caryn to do their removals (four funeral homes plus a cremation society) and just yesterday landed another funeral home with two locations. I’m keeping my fingers crossed for good luck but I know Lance will be great and I fully support him in this. Here’s to entrepreneurship, fulfilling dreams, and never seeing my husband again!  

Random Photos

This was the last Sunday in our duplex.

Every night Cora takes off some article of clothing. One night managed to get all tangled up in her shirt and was pretty stuck, I almost had to cut the shirt off.

 Some intense riding, and yes, we finally found a bike for him.
 Here's my happy girl! Unfortunately, the smiles didn't last very long.

I love this boy!
 Enjoying a picnic outside with my boy.
 Kimball actually took this picture.
 Playing with friends.

Our puppy.

Cora's First Day of College

If I had one word to sum up this experience, it would be AWESOME!!! Cora’s PT, Ginette, asked if we’d like to participate in a class she was teaching at EWU and of course I said yes. Before we got into the class she had already briefed the students about Cora’s history – the heart defects, brain abnormalities, stomach surgery, her specific delays, etc. etc. so when we walked in there they had a really good idea of what she was and was not capable of.

The class had about 40 students, plus Ginette, plus the PT professor. About 5-6 students were actually on the floor working with Cora and Ginette for hands-on experience. It was like a mini PT session and CORA WAS ABSOLUTELY IN LOVE!!! She wasn’t shy and didn’t hold back, it was amazing (especially given the pain/discomforts/sickness she’s been in lately). It was even awesome to see Cora playing with each student individually and then out of nowhere she took this one girl’s hand, she was the only one who hadn’t played with Cora. It was cool to see Cora pick up on that. With each activity and movement the professor would point out different bones and muscles that the students needed to be watching and explained why she did something a certain way or how she was able to do something.

They did a 45 minute session and when they were done it was opened up for questions for me as the mother. I was surprised at how few questions there were but I think it’s because they didn’t want to offend me and were extra cautious about that, even though I’m a total open book.

I was so disappointed when it was over! I had the best time and just laughed and smiled the whole time, I really wish Lance could have been there to see it. And I’ll admit, I had a bit of a proud mommy moment. It was awesome to see the students so engaged and smile and laugh with her and for others to witness what a miracle she really is!