Mapping out a plan

Today we went to the developmental pediatrician. I really like her. She knows her stuff and is willing to spend the time with us and give us what we need to help Amelia. 

Amelia was put on medication for her spasticity. I will start this in the morning so I can monitor her. She will be on an extremely low dose to start and then will be monitored over the next couple months. Of this low dose I will only give her a third of what she should be taking so I can watch for seizures as this puts her at a much higher risk for having them. I'm obviously praying for no seizures and that this medication will help limber her up some. 

She will begin serial casting as soon as we can. Both her feet/ankles/lower leg will be casted for 4-6 weeks. Hopefully we won't have to go longer than that. This will be another joyous time for us with casts and sponge baths and finding clothing to fit. I literally just bought all new clothes for her because she skipped 24 month clothes. Ugh 

Amelia is a perfect candidate for selective dorsal rhizotomy. This is a neurosurgical procedure where thankfully her NS is very skilled at. He will go into her spinal cord and interrupt the nerve that is causing her spasticity in her. This is a permanent and scary procedure. They don't even think of doing this surgery till 3/4 but it has to be done before 8. In the next year or so we will see where Amelia is at and will decide if she's ready for this surgery (if this is something Matt and I want to do). 

Her DP was very, very impressed at Amelia's speech and her cognitive skills. That made me proud! She may be lacking in gross motor skills but she's one smart cookie! 

Okay on that note I may have to go make the baby some cookies hehe

During this appointment Amelia said to the resident (who promised her a sticker) I want my sticker please. This impressed them both. Then she decided to take her shirt off while she was playing with the Doctor. She's such a hoot! Love my little monkey butt (her new phrase). 

Orthopedic Appointment

Look at me go!! Twice in a week! I must be not sleeping or something lol. We had an appointment with Dr Mencio, an orthopedic doctor today. Things went better than expected, but of course we left with our heads down. Poor Amelia had to get an X-ray and I couldn't be in there with her. I sat outside the door crying as she yelled mama, mama, mama. Times like these I wish she never learned mama. Hearing her cry would have been bad enough, but her calling for me is rough I tell ya.

He looked at and felt her spine before really speaking to me about it. He said based on just looks and feel, he would dx her with scoliosis. My heart broke. Then he showed me the computer monitor that had an image of her spine up. He said he had to look at the name twice to make sure they didn't put the wrong one in her chart. Her spine is perfectly straight. I may or may not have shed a tear or two. He said that right now she has a lot of trunk control issues and that is what is making her spine appear to have issues. We need to work hard, as we currently are, to make sure that doesn't change.

He then looked at her ankles. Yes, she does have a lot of tightness in them. Yes her Achilles could be altered to help. The form of cerebral palsy Amelia has is spasticity. She's extremely tight. I watch how easy it is for babies and toddlers to move around and bend their bodies. Amelia can't do that. The movements she makes takes a lot of effort for her. There are a few treatment options to try with her. There is surgery on the Achilles. This is something he wants to avoid right now. Doing that will help a little, but she will still have the tightness and it won't be that helpful. We could cast her feet. They would be flexed and casted for however long he saw fit. He doesn't want to do that right now. He thinks it would help stretch her and give her what she needs, but there is a very high chance that while casting her she would pop her heel up (the issue we are having with her splints and orthos) and that would cause more harm than good because she would have sores on her heels that would need to heal before anything else could be done. Another option is Intrathecal Baclofen Therapy. What the heck is IBT? It is where they place a pump in her spine and that pump would infuse baclofen directly into the spinal cord. This would help her body loosen up. This is a scary option for us. That would mean another surgery, another foreign object in her body. More things to worry about. Thankfully Dr. Mencio decided that he doesn't even want to look into this route. With Amelia having a shunt and having hydrocephalus and having chairi malformation he doesn't know if she would qualify for the IBT pump. If it comes down to her needing one we would work with Dr. Naftel on this along with a spasticity specialist.

Well there are all these options but none of them he signed off on. So now what? He wants her to try oral medication that is specific for spasticity. He wants to continue trying night splints and AFO's along with stretching and medication before he pursues anything from his stand point. We have an appointment with Amelia's developmental pediatrician on the 18th. If she feels comfortable going with Dr. Mencio's suggestions she will prescribe the medication and we will begin. If she doesn't want to go that route than we will have to see a spasticity specialist who will prescribe the medication and monitor Amelia.

Amelia has made some great progress with her muscle tone. She is getting on her knees from any position. She actually prefers her knees over anything now, so we have to watch her on her sitting. We took a huge step forward with those gains (starting to pull to stand, getting on knees, crawling on quads - even if her legs are spread) but then we took an even bigger step backward with the tone in her feet, ankles, legs, tummy. So that is what we will be working on. She will be getting new AFO's soon. She will meet with the orthatist on the 12th to get measured. So hopefully those will be in Dec 3rd. She was also remeasured for a compression suit a few weeks ago. I thought that would have been in by now. Maybe he will bring it next week. I am hoping and praying so hard that this medication will help her tremendously and we will start to see some gross motor gains in the next few months.

I also spoke with the NP from her NS office today. She said that it is common for the tube to move as her skin hasn't fused to her plate yet. So we are just watching that and making sure no other issues arise.

Keep the prayers coming please. It is so hard to watch her struggle and hurting. Thanks

A walk, a care bear, a normal head

It's been a while, and I am sorry about that. Life keeps getting in the way. Every time I have a few minutes free I am finding something that needs to get done, like paying bills, or decorations for a special someone's upcoming birthday party. So what has been going on in the past 2 months?

Amelia (and her family and friends) participated in the Hydrocephalus Awareness walk. She was the leader of Amazing Amelia's Army. The motto was "We are in this fight together" and it couldn't be more true. Every battle she has to face, she has an army of people behind her fighting for her too. I love that she has so much support from all around the world. I wish we could just give everyone a big hug. Amelia was so excited to show the world that she was walking with her walker. The biggest supporter for her was her NS Dr. Naftel. He really is an amazing person. You can tell he holds a special place for his patients in his heart. I honestly think Amelia holds the highest honor as she was mearly 16 hours old when he met her and 20 hours old when her life was in his hands. That is his girl.

Speaking of Dr. Naftel and surgery, since Amelia's last surgery we have been blessed by a "normal" head. Normal for us means scars on almost every possible place on her head, hair slowly growing in, misshapen, and fluid free. That is the most important part, fluid free. We had a scare Friday night, her tube slipped and was down by her eye. We didn't know the tube slipped and thought that it became disconnected and move forward. We will be waiting for an appointment time and date tomorrow morning. I don't think the tube should have moved, especially after over a month. So I am anxious to hear what Dr Naftel has to say about that. She also has an appointment with a new specialist regarding 2 different issues (new ones) and once we are given more information on that (Tuesday) I will update everyone.

Halloween was a hit with Miss Amelia. She was the cutest care bear ever. Everywhere we went she was complemented on her costume! She mastered saying Trick or Treat, Smell My Feet, but instead of saying it to the correct people she just said it in the car, or outside waiting. Little snot!! She did have fun watching kids in their costumes and had fun picking candy up and putting it in her bucket.

Halloween did make me really sad. It is really hard to watch all these kiddos her age, younger, older, running around in their costumes. Walking to the doors and saying trick or treat. I was hoping that the coping with her not walking would get easier, but the closer she gets to 2, the more she realizes she can't do the same things and is upset by it, the harder it is.