Medicine:
We started Tessa on Baclofen (muscle relaxer) at the beginning of January after a very important appointment with her Physiatrist. However, after 7 long weeks of gradually increasing the dosage until achieving the full dose, we saw no improvement. The last 3 of those 7 weeks were definitely the hardest. Even though Tessa was able to overcome some of the sleepiness side-effects, the muscle relaxer stripped her of almost all of her trunk, neck and head control without providing any relief to the tightness in her arms and legs. She has also lost so much of her personality and motivation. It is very apparent that she spends most of her time frustrated over her loss of control and it completely distracts her from engaging activities. You don't know until you try, and we are glad we tried...but now, we are very glad to be a week into weaning her back off the medicine. I'm hoping just because the medicine didn't work now, doesn't mean that it might not work for her in the future. But what we do know, is that Tessa has an incredible amount of functional movement on her own, and to strip that away from her without providing her any relief to her tight muscles, is definitely not our goal. We have no idea if this means we will look into the option of Botox injections or not, for now, we are just peaceful about our decision for Tessa and are so excited for her to get her confidence, motivation, and most importantly...her giggles back!
School:
Tessa's IEP Planning meeting is tentatively scheduled for Thursday March 14th. It is always interesting trying to get these meetings scheduled due to the number of attendees. The planning meeting is basically the meeting right before the official IEP where they determine if any additional testing is needed in order to efficiently put together a formal plan. We will have each of Tessa's current therapists in attendance to basically have a time of knowledge-transfer to the therapists and teachers within the school district. The special needs director will be there, as well as anyone else that it will require to get all this done. Sometimes it's hard for me to wrap my head around the magnitude of this and how many people it requires to be involved...but nobody brings people together better than our sweet Tessa! There are so many nuts and bolts to this new chapter in our lives and I am so thankful to be able to turn it over to the Lord. Granted, I have my stress and my emotions all wrapped up in it too...I am human...but going beyond that, I have a peace that the Lord is going to work things out according to His will and His plan for Tessa's life and everyone else's life that's involved in this process.
New House:
Closing on our new house is tentatively scheduled for Friday March 15th. Darin is out of school that day and then has spring break the following week. We figured this was a better time than any to try and get settled in our new home. We gave our 30 day notice at our rent house on February 20th...so we will have to be completely out by Wednesday March 20th. We are locked into our lease until the end of May unless they are able to re-lease it. We have definitely been praying that there is someone out there to rent it so that we are not paying rent and a new mortgage for two months.
Equipment:
We have been dealing with some frustrations over Tessa's power chair order. Medicaid isn't completely satisfied with the video footage that we have provided and are requesting more. We sent them the video of Tessa using the chair to knock down boxes in the garage (how is this not satisfying??). Since we had our last house on the market at the time the power chair study began, and now have been in a rent house...Tessa hasn't had the freedom inside to explore her environment. We decided to do most of her power chair time outside, for experimenting and play time. Our goal was to give her as much freedom as possible...considering how small the space was/is inside and the potential damage she could do to the walls ;) Well, Medicaid has to see appropriate functional use of the chair in her natural environment...meaning inside, using it to go into the kitchen or to her room, etc. etc. We have spent the last two years of our lives in upheaval seeking this very thing....functional space for Tessa in her natural environment inside...now just give her the darn chair! Yes, I'm irritated. In a matter of two weeks we will have the very best home for Tessa to begin mastering a power chair...this is not the time to be toying with my emotions on this matter! :-P
April 8th (IFSP to IEP):
It is incredibly challenging to prepare for closing such a huge chapter in life. We are excited about Tessa's transition into the school district and all the new experiences just waiting for her there, but moving on from the amazing people that have been so intimately involved in our lives for the last 3 years, will be so difficult. All of her SoonerStart therapists, her team at Hearts for Hearing, the women involved with the Power Chair Study, the team at the UCO preschool for the deaf, and each of her amazing nannies and caregivers...not to mention all the doctors, nurses and surgeons that have also helped bring Tessa to where she is today. The kindness and dedication that each and every one of these individuals have shown us in 3 years time, is beyond any level of appreciation we could show. They have seen us through some of our rawest and lowest days and have also celebrated with us in our most joyful moments of blessings and accomplishments. We have a plan in the making...a time of celebration...and will be excited to share more as the details come together :)
After 3 full days of an intense migraine, this mama has had to slow down and take some deep breaths. It is crazy to reach a point where you feel like your body is completely failing you. It's hard to explain; I don't have a lot of anxiety going on, I trust that the Lord's hand is firmly on each thing we have coming up, but the sheer magnitude of each situation seems to be taking it's toll on me, whether I like it or not. I have been feeling rather defeated...why am I not able to be everything I need to be right now? We have so many things coming up, and I need to be at my very best both physically and emotionally, and I'm not. And that's just it...I can't. Physically, emotionally, spiritually...I can't do it on my own. And if the Lord chooses a migraine to give me a swift kick in the butt to remind me of this, I'll gladly take it ;) I am super independent...to a fault. I don't like help...and I sure don't like asking for help. If it's not something I can do on my own and handle on my own...I'm out. Ask my husband, he knows all too well ;) When people offer 'help' as a solution to my problem, I typically don't interpret it as a solution. In my world, my stupid-weak-human-world, problems are only solved when I am capable of being the solution. Ridiculous, I know...and incredibly prideful. So, a chiropractor appointment yesterday it was. My body is tense from head to toe and it is going to take someone looking me in the eyes and telling me to "relax"...telling me that my body cannot take the strain it's under. I could not believe how much better I felt after just one appointment. I'm going back today to talk about my x-rays and get a plan in place for relief. I wish I was smart enough to realize all this before it got this bad...but better late than never. Life is full of hard lessons...and so many that I have yet to learn. For this week, I'm slowing down. I'm trying to find the Lord in what I'm doing, instead of doing it alone. I want to be the very best I can be, and in order to do that, I have to learn how to surrender myself to the Lord. Keeping my eyes on what's really important!
~Whitney
