Wednesday, April 22, 2015

Cora's Update, My Rant, & 220

Last Thursday Cora had her second gastric emptying study to determine if that was causing any gastric problems in the last 10 weeks that she’s been sick. We were at the hospital from 7-1pm and I was completely exhausted by the end of the day! She certainly didn’t like to be strapped to the papoose thing so she cried the whole time she was under the camera. After the study the technician gave her a little bear that she didn’t let go of all day long, it was so cute! 

The next day I had the appointment with GI and Jordan accompanied me so they could do a co-treatment. LOVE those kind, talk about killing two birds with one stone! We found that she does still have gastroparesis, before surgery last year her emptying time was at 408 minutes with 60 being the normal. This time she was at 200 minutes so the surgery definitely helped but it didn’t correct the problem entirely. There are only three options left at this point: #1 is give erythromycin to help her empty faster but she’s already tried that and is allergic. #2 to give Reglan which I’m refusing to try because of the neurological side affects, I don’t need to make her brain abnormalities worse or cause more neurological problems by giving her this medicine. That one is a definite no. And #3 is to use an appetite stimulant. The purpose of which is to relax the stomach, letting food empty faster and to promote weight gain by making her more hungry. The one and only caution the doctor said, “Now make sure you give it to her after dinner because it will make her sleepy. You’ll also want to sleep with her because the drug could make her so sleepy that she stops breathing.” Ummmm……why would I want to give it to her then?! I did call a few of her other doctors to get second and third opinions on this drug and they said it would absolutely help and have great reviews about it. I’m still a little undecided so I haven’t tried it yet. 

We also scheduled a scope of a partial colonoscopy and an endoscopy to see if there are further issues that haven’t been discovered in her GI tract. The doctor also ordered another swallow study because although her lungs are clear, she’s still got pharyngo-nasal regurgitation going on that is infecting her upper respiratory. She also wanted to start her on a flavored drink to help with calorie consumption and hydration, I’m also a little skeptical of this drink because the last two they tried Cora was allergic to. But this is not to replace the Elecare which is good. 

Monday we met with the Ophthalmologist who scheduled her tear duct probe for May 15, the same day as her scope. I’m anxious to have this one done and even more thrilled that it’s only a 5 minute procedure. I’m really tired of all the comments I get about her eyes, hopefully this will put an end to it. She had a full exam and is a bit far sighted but not enough to need glasses. When looking at distances her left eye does wander out (which we had a problem with when she was a newborn but it drastically improved). If it becomes more noticeable (Lance and I have never noticed it) and a problem then they will do surgery to correct that at a later time, probably about a year or so. 

Friday we have pulmonology appointment which I’m not looking forward to because they’re the only department that doesn’t explain themselves very well. Next week is the allergist and the following week is neurology and the neurosurgeon. Ginette has been working really hard with Cora so that she will walk into the neurologist’s office and prove him wrong (he’s the one who told me she would never walk). Cora works so hard at her therapies and is so driven and motivated!

Now to interpret what all of this means…..when I was done with the GI appointment I lost all composure. I felt completely defeated! It felt like everything we had worked for in the past year was all a waste. I can’t begin to add up the number of hours I spend in a doctor’s office or hospital, and for what?! Just to be told that the gastroparesis wasn’t corrected?! I felt hopelessness like I’ve never felt before. Then the anger set in and I really wanted to give up. I’m drained and exhausted and can’t possibly cry any more tears yet my children are so dependent on me. We keep getting bad news after bad news from so many doctors and I’m just so tired. So tired of the 7-9 appointments each week, every week, with no end in sight. So tired of putting my non-special needs child and my marriage on the back burner. So tired of giving so much of myself and stretching myself so thin that I can’t possibly do one more hour. I don’t know how much longer I can do this!

And yet, Cora is a fighter and so fearless! If she isn’t going to give up then how can I? How could I give up on my baby? She’s my little darling! It’s been really hard for me to get back up this time, I feel like we take one step forward and two back. I also think about her wins vs. losses and I must have lost my bloody mind to be complaining, we have seen so many miracles! Those miracles are some of my most spiritual experiences and are so refreshing but at the same time, it doesn’t lessen the load that I’ve been asked to carry.

For tax purposes, I counted all the doctor appointments we had last year: 65-70 give or take ones that weren’t written down due to immediate need and those that were rescheduled. The number of therapies and dietitian appointments for last year alone are about 150, so altogether we had about 220 appointments. That is seriously insane!!!!!

I’m feeling a little bit better now that I’ve had a few days to analyze what this means for myself and for Cora, and after talking with Lance. He suggested that I take a week off, I should cancel therapies and doctor appointments for a week so I can just enjoy my children and enjoy being a mom. He said that although Cora does need this medical help she certainly needs a happy mom and I’m the only one that can give that to my kids. I’m really considering doing that, but probably not until June because of these major appointments coming up it would take months to get back into these specialists. 

Lance has been so helpful and such a lifesaver! On these hard days he’ll do the laundry or cleaning and he’ll let me get out of the house for a few hours by myself. He even bought me a few Snickers bars and left them in the freezer for me. What a guy.

I can do this. It’s extremely difficult but I can do this and I can do it because I have to do it. These kids need me and they need a happy me. 

From this last general conference Elder Nielsen counseled, “We watch, we pray, and we wait for the Lord’s hand to be revealed.” 

I found this other quote but I’m not sure who said it, “This moment in the middle will not last forever. There will be an end, an answer, and a promise. But right here and now, you have the privilege of journeying with the Lord. Enjoy the journey, for I have found that we come to know Him best in the moments we need Him most. Years from now, when you look back, you might discover that this moment, right here in the middle, was one of the most precious moments of your life. Because it led your heart to His.”

Cuteness Overload

Church Can Be Tiring

My Spring Chicks

Weekly Mom & Son Date

Cora’s therapy schedule has changed a little bit so on Tuesdays when I can’t take Kimball into the school with me, I drop Cora off and the two of us have our weekly date. Luckily, there are a lot of things to do nearby. One day we went to McDonald’s for an ice cream cone and the next day we went to the library where Kimball played around on the kids’ computer, played with blocks, and we read together. I’m loving this one on one time with him!

Tuesday, April 14, 2015

Cora The Champ

This particular day at school was AWESOME!!! Ginette had Cora on a little treadmill that she was harnessed into. At first she hated it because the tread was going so slow and she really pitched a fit for Ginette. But as speed picked up she loved it and did much better. She still drags her right leg a little and turns it outward but she's catching on so fast! There's a little mirror on the treadmill that Cora can see herself in, she thought that was pretty awesome. I took several videos that day, she also walked with the Y bike and had the best facial expressions but I can't get the videos to load.

At Jan's session I thought my heart would burst! Cora absolutely loves doing little nursery rhymes or games and as Jan was singing with her, Cora just made the most adorable and irresistible sounds and gestures. I thought my heart would melt all over the floor, it was the darn cutest thing I had seen in a long time! And Jan gave me a few snack ideas that are allergen free which has been a huge help. It was the first session that Jan has ever heard Cora and she's been working with Cora for a year now! I actually got teary eyed because it was the first time Cora had shown her true happy self in eight weeks (since being "sick").

It's days like this that I absolutely LOVE being so involved with all of Cora's therapies and doctor appointments. We are told over and over about everything she can't do or what she's behind on or what is abnormal about her. It's so nice to have days that we see and hear the progress. I'm so appreciative and absolutely humbled and grateful for her therapists!!! I was on cloud nine and on such a happiness high that day. You rock it, baby girl!

Happy Hooligans

Kimball Says

After church a few weeks ago I asked Kimball what he learned about in Primary. He said, referring to Easter, "Jesus died and Mary was sad. Then Jesus killed Daddy."

"Is the dish shower clean?"

Cognitive Intervention

Cora had her cognitive evaluation a few weeks ago and I thought she didn’t do well because the teacher said she was low in areas. I thought that was odd because from my observation I thought she did rather well. But the report say, “Cora’s cognitive skills are at the 14 month level…….shows her social-emotional development to be at 12 months.” She now has four therapies all of which are once a week, the last one added is Cognitive Intervention. She’s due to be reevaluated from PT, OT, and ST so I’m sure I’ll get those results in a week or two. 

Because either Cora or I have been sick I’ve had to postpone a lot of important doctor appointments for her and therefore don’t really have any updates on her. Although since eliminating those four allergens from her diet we’ve been so relieved to have the usual Cora back! It’s so refreshing and I really missed her!!!