Friday, April 27, 2012

Spasticity Clinic

Addie chewing on my bracelet, waiting for her appt at Dell Children's

We've been watching Addie for tone issues and tightness since birth and didn't really notice any. Until a few months ago. Addie's always shown some weakness in her left side but had pretty even tone in all her limbs. At her OT eval on March 15th, her OT noticed that one of Addie's legs seemed shorter than the other. Something our PT had not noticed. So when I mentioned it to her PT, she checked Addie's legs out very well, pulling and bending and laying her on her belly to check each segment of her leg against the other one to see if she could identify which part was shorter than then other. It seems they are all equal. So Addison has what's called apparent leg length discrepancy. Meaning it's most a tone issue - aka tightness - that is drawing one leg up higher than the other. In the process of her thorough once over, Addie's PT also noticed that she has uneven thigh folds. Basically a crease in her chubby thigh on her left leg that she doesn't have on her right leg. The uneven leg fold combined with the leg length discrepancy concerned the PT enough for her to suggest asking Addie's pedi for a hip x-ray to check for hip dysplasia. Basically, to see if one of her hips was pulling of out the socket to the point of even dislocation.

So when we were at Dr. N for Grayson's 9 yr well check, I mentioned it to Dr. N and she wanted an x-ray done and then said we should be referred to a spasticity clinic -- for kids with CP. I had felt like Addie had CP once we started seeing the one sided weakness and especially after we saw the tightness in her left foot and her left hand fisting more. I was prepared for this and even slightly relieved that I wasn't the only one thinking this way. I took Grayson home and brought Addie right back up to the radiology department that afternoon to get the x-ray done.

I heard from the nurse the very next day that the radiologist impression was that her hips were normal (PTL!) so now that hip dysplasia was ruled out, we were moving on with the spasticity clinic referral. This was back at the beginning of April. Well, two weeks passed and I hadn't heard from the clinic so I called to follow up and was able to talk to the nurse I needed - after calling about 5 different places - and got her in on April 25th. Thankfully Melissa was able to take a half day off so Jack could still go to speech and so she could meet Grayson off the bus. Also, thankfully because this meant I was able to take Addie to the appointment by myself and not have to drag Jack along with us. I could actually concentrate on what the doctor's were saying. YAY!

We arrived about 5 minutes early, when we were suggested to be 15 mins early but hey - early is early in my book. Especially when schlepping a 24 lb 11 month old and all her stuff with you! I had organized her medical binder the day before, labeling all her MRI discs by date in case they needed to view them and had her ECI PT and OT goals with me to show them those as well.

We were called back, given a hospital bracelet for Addie, weighed in and vitals taken and then shown to a room.

The first person that came in was a physical therapist. She was VERY impressed with Addie and said she was doing great with her physical milestones. She felt like Addie was on track for her age and was doing too well for any intervention but it would be up to the doctor to decide. The doctor is a rehab specialist, a physiatrist. Basically a PT with an MD. So it was nice to get a second opinion from both a PT and a PT MD if that makes sense.

The doctor made it into the room about an hour after our original appointment, not because they were running late but you just have to go through stages. The whole point of a spasticity clinic is to see everyone you need in one place since CP is a multi faceted medical profession diagnosis.

The doctor, another Dr. N, really took her time with Addie. She played with her, and had her track and reach for toys. She really worked on getting Addie to reach with her left hand, even if it meant I had to hold her right hand down to get her to do it. She checked her reflexes, tone, spine, shoulders and hips.

And she looked at me and said "Who in the world referred you to us?"

I laughed and said well it's kind of a long story and explained the whole process as to how we ended up with an appointment there.

The doctor said it tongue in cheek, but basically what she was saying was that thankfully, PRAISINGLY, Addie is doing so well she does not need the services of the spasticity clinic at this time.

She said that, yes Addie does have CP. Any motor planning issue that is the result of neurological issues is cerebral palsy. Something I knew already and had mom diagnosed months ago. Addie has a type of cp called hemiplegia. Meaning she has weakness and tightness in her muscles in only one side of her body. Her left side. This could be because her right ventricles are still much larger than her left. It could be from the brain bleeds that were found at 10 days old. It could be from the collapsed cortex when she overdrained. It could be from brain damage caused from pressure from all the fluid before she was born. We don't know and most likely never will.

But it doesn't matter what caused it.

We are doing everything we can to help her.

Dr. N explained that there are steps the go through with a kid like Addie (or any kid with CP for that matter). 1. Is this child in therapy? Yes she is. 2. Is this child being massaged and stretched to keep the tendons in her legs long... to keep the muscles growing so the bone will continue to grow? Yes 3. Is this child standing in proper form? This was the one that got us going in the route of AFOs and CP talk with our pedi in the first place. But Dr. N feels Addie has a great stance. It helps that Addison has learned to bend her right knee now to accommodate her shorter left leg. For a while she was picking her left leg up instead of weight bearing on it, and we were concerned she was stopping to weight bear on her weaker side. But that's no longer the case. So no AFOs (braces) for Addison at this point in time. They want to see how she progresses on her own since she is doing so well without them as of now. The leg length discrepancy is so slight they don't want to correct it as of now anyway, hoping that the muscles in her left hip will relax and it will go away on it's own. 4. Does the child need botox injections for contractures and spasticity? No - thankfully. Dr. N said she's no where near that point and that her hemiplegia is very mild. Thank you Lord! The list went on but once you reached a few no's the next steps were more invasive, for more severely affected kiddos.

We were basically kicked out and told to come to see Dr. N at her rehab clinic next time instead of the spasticity clinic. The ortho doc came in while we were talking to Dr. N to fit her for AFOs, the next step for 90% (or more) of the new patients at the clinic and Dr. N turned him away. Said Addie was too much of a rock star to need him. It seemed to please the ortho doc. I can imagine, in a clinic like that, it's a pleasure to not be needed.

We left with instructions to come back in six months, keep doing what we are doing, and contact them if we see things 'progress' rapidly. I says 'progress' because CP is not a progressive disease, the brain damage is done and doesn't get worse. But the way it manifests and the way the muscle tone changes as they are used more can appear to worsen.

I'm extremely pleased and thankful for the news we were given. I knew the diagnosis of CP was coming.... I actually felt better knowing it was confirmed by a doc and I didn't have to keep saying "It's not official yet....". CP is a broad spectrum of diagnosis just like hydrocephalus. And we are so very blessed that so far, Addie is falling on the mild side of the CP spectrum.

Blessings ~ Aimee

Random phone pics in no particular order

Hannah Banana! Our Maltese puppy
Addie starting to CRUISE !! Grayson's bed is the perfect height for her.
Really inspecting the remote!
BBQ in Lockhart
Sick little girl!! She hit 104 fever Thursday morning. This was Thursday afternoon while we waited for all the tests results. Praise God it was just a viral infection that she fought off in 24 hrs.
Holding her own bottle while we were out shopping! YAY!
Sitting at the big table for the first time! We are really trying to eat at the table every night we are all home for dinner! The boys love it!
First pizza!! She was a fan - not that I'm surprised!
Someone was awake when it was time to watch Grayson get on the bus, so she got to go with me outside.
Sweet Honey Bee. I took this the night before she and Holly got out of the fence. We still haven't found them.        :( Breaks my heart.
Addie's pack and play was waiting for us when we got back from Mom and Dad's for Easter. I'm so happy to have a safe (for now!) place to put Addie when I need to make breakfast or do laundry or whatever! She's EVERYWHERE - which is such a blessing but a safety concern when I can't follow her.
Stuff for Addie's party. Things are starting to come together. So excited for May 20th to celebrate an amazing little girl's first birthday!
Ready for a Friday Fun Night with Aunt Missy, Grayson and Jackson
Jack showing off his Spiderman pancakes thanks to MiMi's awesome Easter gift!

Thursday, April 19, 2012

Spring time!

Things have been skipping along in our house. We have been enjoying spring time in Texas ... a very short season in Texas so we need to make the most of it!

We took the boys on a car ride into the country and had a picnic by a creek. We picked up Rudy's on the way and enjoy BBQ sandwiches on one of my grandmother's quilts as we listened to the stream run beside us. It was a pretty perfect afternoon. After lunch, we parked Addison's stroller on the bank and waded in the stream. The boys 'accidently' fell in. Ahem. Addie got her feet wet too, her first time getting her feet wet in a natural source of water. She seems to like it... another water baby it seems.

Addison had her follow up ENT appointment and everything looks great with her tubes. Her PT noticed that she has uneven thigh folds which can be a sign of hip dysplasia so we ran into ADC for a hip x-ray that thankfully was normal. We feel like it's her muscle tightness in her left hip that is pulling her leg up into her hip socket, giving her apparent leg length discrepancy. Her left leg seems shorter than her right because of the difference in her muscle tone from one side to the other. She is getting a referral to a spasticity clinic to see if she needs an official diagnosis of Cerebral Palsy - hemiplegia or not. It's just another label that doesn't define her... but sometimes the labels do open some doors for her. There is a possibility that she will need to switch PTs to a clinic setting that is more specialized in CP kids and understand how neuro development affects gross motor skills, especially when there is so much going on in a hydro brain.

Our last week and half have been blissfully free of medical appointments! Something I am fully enjoying ! I went to Target all by myself Tuesday, April 4 and helped the Easter bunny out some (ahem) and picked up a hot off the press copy of Kelle Hampton's book Bloom. If you don't know who she is, google her for goodness sake! She's a mom that is only a few months older than I am, that has a daughter that has Down Syndrome. Unlike my situation, Kelle had no warning, no preparation for her life being turned upside down the day her daughter was born and she found out that Nella had an extra 21st chromosome. The eight weeks I knew about Addie's hydro before she was born were hell, but I am thankful that I had some time to prepare and wrap my mind around what was going on as much as possible. Kelle had a little family blog that went viral when she posted the brutally honest yet beautifully hopeful birth story of her daughter that was born with DS. Since then her blog has grown leaps and bounds and she has now published her first book, a memoir through the first year of Nella's life. Check her out here !

I opened a bag of Reese's peanut butter eggs (ha!) and opened her book while still sitting in the parking lot of Target and was crying at the dedication... it's that good. I read a bit more sitting in the drive way and then again in the bathtub, on the couch, in the bed... you get the picture. I stayed up til 3am reading and woke the next morning with swollen eyes but they were so worth it. I finished the book the next night before we had to head out of town. I bought two copies, one to proudly display on my bookshelf (Kelle's also a photographer and the book is beautiful and full of pics) and one that I keep hidden, with underlining and notes in the margin that I will re-read years to come and make all new notes as I grow in the journey of being a special needs mom.

We had to reshedule two of the therapies the week of Easter because we left out of town on Thursday. Grayson got sent home with an ear infection on Wednesday and had to start antibiotics. He was home from school on Thursday so we were packed and ready to go by the time Melissa got here. We loaded up 5 people and a billion pieces of luggage into Melissa's little VW and made our way through a list of errands and finally to mom's house.

On Good Friday, we went back roading looking for bluebonnet fields worthy of a photo op. And we found plenty!

We drove all the way out to Castell and then back up a back road that ran beside the Llano river, then across a slab crossing and then stopped a creek crossing where we got out to walk in the clear stream and take some more pictures.

The back road led us back to mom's road and we made a big loop back to the house. Three hours! The kids were all well behaved and seemed to enjoy it. Melissa took the boys in mom's car and I had Addie, Raychel and Mom in Melissa's Jetta. The kids enjoyed the creek so much... and after hearing my nephew Jared declare that he had never had a picnic, we decided to head back to the creek on Saturday - the short way this time - and pack a picnic lunch.

We took towels, a table cloth, peanut butter sandwiches, cookies, and a cooler full of sodas. Addie chilled in an umbrella stroller most of the time and we kept her underneath a golf umbrella, out of the sun. The boys and Raychel walked way up the creek and I sat on a rock in the middle of the water and put my feet into the running stream. Great afternoon!!

My brother, sister in law and nephews drove in from San Antonio for the weekend and I had texted them directions to where we were. We had the creek all to ourselves for two whole hours.

We returned back to mom's in time to play some mean 42 and enjoy mom's fried chicken for dinner. Addie had her first taste of rice and gravy!! Southern staple ! She liked it. It didn't take long before I realized how sun burned I was... my arms and thighs. Jack had a red face and Addie even had a bit of sun kissed skin. Very thankful we kept her under the umbrella as much as we did if she turned a little pink from no more in the sun than she was. ( I bought baby sun screen at Target this week for all our summer plans!)

We stayed up very late, dying eggs, bathing Addie, and threatening boys to go to sleep so the Easter bunny could come see them!

Alarm was set for 9:00am and we managed to get Easter eggs found, breakfast eaten, and all of us dressed and ready for church by 10:30am. Whew!

Addie was VERY good in church (as were my boys :) ). She was passed back and forth between me, Raychel and Jacob and fell asleep for about half of it. She didn't quite know how to take the first time we all stood up for a hymnal. I sat down with her and she was fine. So glad that her aversion to loud music like at the football game seems to be an occasional thing and not an every time thing.

We returned home after church and took a million pictures out in mom and dad's front yard.

Easter lunch was YUMMY! Melissa stayed home and cooked all morning while we all went to church.

Mom, Maurie and I all got the giggles... about something that isn't quite appropriate for blog posting... but was really funny nonetheless. There's no better feeling than laughing like idiots with your family that 100% gets you. (and your crazy sense of humor)

More dominoes were played after lunch. I edited photos and had to start packing a full hour before it was time to leave. All too soon our weekend away was over and we were heading back to Austin at 5pm on Sunday. The silver lining was that Adam was off work and waiting for us when we got home!! Hate having holidays without him.

Last week was pretty normal. The cleaning ladies came after a 6 month hiatus. I finally broke down and called them back and said HELP! Addie is doing so many wonderful things but I have to watch her all the time. She's pulling up which is amazing... but she's not very stable and falls a lot. So I can't put her down on the floor and not follow her around everywhere. Nor can I leave her in her crib because she's pulling up in there and I don't want to lower her crib cus it's such a great therapy spot for pulling up and cruising, so she can't be in her crib without being supervised. Long story short, I don't have a lot of time to do anything around the house ! I'm doing good to keep the dishes done, laundry going and to sweep and spot clean the boys bathroom before  a therapist shows up!

So.... seven hours later, two cleaning ladies had our house looking amazing... and said they really wanted to come help me once a month and would give us a pretty substantial discount because they felt good helping us since it was VERY apparent (my words LOL) that I was failing miserably at keeping the house clean!! So blessed to have those two cleaning ladies. Complete happenstance that I called them when they put their business card on our door last summer.  I have them scheduled again for the day before Addie's first birthday!!

Did I just type that?
First birthday?!!!

It's coming round the corner!

Addison will be 11 months old this Friday which means we have a month to get her party planned! Yikes! I ordered the invites Friday night and we have started to pick up a few things here or there. Melissa and I will be going to put an order in for her cake next Friday. Thank goodness for Pinterest. How did I ever plan a birthday party (or anything for that matter) without a pin board to put all my ideas and inspirations on?! LOL

I'll be sure to post pictures of Addie on her 11 months birthday this Friday.

~ Aimee