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Archive for the ‘Early Intervention’ Category

Well… we are ๐Ÿ˜‰

She got the tube placed July 31st. Today is August 24th. On July 31st she weighed 19lbs 12oz. Today?

Are you ready?

Are you sure?

TWENTY ONE POUNDS TWELVE OUNCES!!!! TWO WHOLE POUNDS IN TWENTY FOUR DAYS!!!

Yeah. That. IS AMAZING. Right? In and of itself it would be enough to make me want to scream from the roof tops (or type in all caps as it were ๐Ÿ˜‰ ). However, that is only the very tip of the iceberg. Amidst all of the changing in her body, her life, her system there are so many other profound things taking place. So many things that we could have never imagined changing so drastically in such a short period of time.

The small amount of muscle relaxer they have put her on to help her stomach relax and digest has relaxed the rest of her body enough to where she has regained the ability to ‘tripod sit’ or sit with one hand on the floor. She had lost the ability to do that after she started getting stronger and more tense. Today she had an advanced technology appointment and sat up for a good five minutes while playing with her therapist.

Her vocalization has greatly increased. She still isn’t saying ‘words’ but her range of sound and frequency is WAY up. She makes happy noises when she wants something, fusses when she doesn’t get what she wants, and manages to convey what item amongst many she desires. (Sound like a typical 2 year old or what ๐Ÿ˜‰ ). Her speech therapist said that it may be due to the muscle relaxer as well due to her muscles around her vocal cords relaxing enough to let the air pass through more easily.

Overall her clarity is intense. She has always been an observer but it is amazing to me how well she seems to take things in now. We think this is due to the most exciting change of them all…SHE IS NOT SEIZING! She had gotten to the point where she was having upwards of 60 seizures a day that lasted between 5 and 30 seconds. Knock on wood they have halted. She is finally getting all of her meds, she is hydrated, and she is not constantly stressed about what she is having to eat. She has always been so happy, but this happy? It’s a completely clear comprehending happy.

The last couple weeks have been hectic, a bit scattered and overwhelming, but definitely in the right direction. The only downfall has been Alyssa’s sleep. Her body is working a lot less so it’s an adjustment to figure out how much sleep she needs. She isn’t sleeping through the night every night right now and some nights she’s up for 3 hours at a time. Frustrating but I know we will find a balance. It’s a small price to pay for all the good that has come out of the last few weeks.

Tomorrow is her final appointment for the study drug. Busy day of blood work, EKG, and a couple hours at the GI office. I’ll admit I’m actually a bit sad I don’t get to see Ms. T as regularly. I always leave feeling a bit more grounded and ready to take on what’s coming. After that I need to find Alyssa a dentist, an occupational therapist, and get her on the physical therapy list. It’s nice to finally have the feeding off the table and have the presence of mind to get other things lined up. In addition, I was pretty apprehensive about pushing her to walk with the frequent seizing. The weights are beginning to lift, the pieces are falling into place, and all just in time to begin gearing up for early childhood classes in February!!

Today was the first day of school for Raina’s girls so we went out tonight to that glorious place where a kid can be a kid. Alyssa had a flipping blast! It was so great to watch her just enjoy herself and be able to ride on the rides and squeal with delight. Little by little I see more and more emerging from her. Each week it gets more exciting for us. She is literally growing overnight at this point and it is quite an astounding thing to watch!

Riding her pony cowgirl style. Shes wearing shorts that are made from yarn that was dyed by a friend. They were knit between myself and 4 other people over the very slow course of two years LOL. Luckily my sweet friend Gina took them home to finish after coming to visit this spring :)

Riding her pony cowgirl style. She's wearing shorts that are made from yarn that was dyed by a friend. They were knit between myself and 4 other people over the very slow course of two years LOL. Luckily my sweet friend Gina took them home to finish after coming to visit this spring ๐Ÿ™‚

singing in the car with Cait

"singing" in the car with Cait

Looking like a super big girl riding a horse :)

Looking like a super big girl riding a horse ๐Ÿ™‚

What should be Chuck Es new advertisement LOL

What should be Chuck E's new advertisement LOL

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Well, OK… so not entirely. Yesterday started off pretty rough. I was in quite the crabtastic mood. I tried to snap out of it but really there is a lot of emotion fueling this situation. It was just a bunch of silly little things that were on my nerves. Not one thing in particular. Like? The fact that there is going to inevitably be stomach acid on every.single.thing. LOL. I was just funky. Then? Like a little slice of heaven today began.

I can’t put into words the level of grateful I feel nearly daily for our roommate. It is amazing to me how the timing, personalities, and every detail just clicked. She? Is good people. Seriously. Well, one of Neil’s favorite bands was playing tonight and she offered to…are you ready… babysit so that we could go. Told him after the mood I was in yesterday she needed me out of the house LOL!! It was something both of us were apprehensive about. I mean… is it a bit irresponsible to ditch your kid a week after surgery? LOL! Well, not when you are leaving her with the one person in your life who you would call if something went awry with the tube. Plus the fact she miiiight have called me and essentially said “GO or you WILL regret it.” So, we went. You know what? Everyone came out of it in one piece. Granted, awake way too late and in one piece LOL! At least she was awesome and didn’t even gripe that the concert went late. Have I mentioned I adore her ๐Ÿ˜‰ .

After we decided to go, I got a call from Early Intervention and they said the physical therapist could make a stop today. Alyssa hadn’t seen PT since we moved so I figured we should squeeze it in. That? May have been the best thing EVER. Seriously, her ability to work with this new PT was AWESOME. Her service coordinator and I have been trying to get her to put stuff in a box for over a year. As soon as we told the new PT … Alyssa picks up these rings and drops them in the box hahaha. Brat. She let the PT stretch her legs and sat up so nice and straight. I’m quite tickled with what the muscle relaxer is doing. She used to be a bit shaky when reaching for things, but now she does it with so much more grace. What’s more exciting? oooh oooh as we were working with the PT the wheelchair place called and they are ordering her chair! I cannot wait! That means we are one step closer to being able to put her on the bus to school in February. I know in my heart of hearts she is going to jump by leaps and boundsย  in school. Just watching her with Raina’s girls is such an amazing thing. Watching her today with the PT. I am so hopeful that with school, improved PT, etc she will find it in her to walk sooner than we could hope ๐Ÿ™‚ . Either way, she’s moving in the right direction!

So, we end the week armed with information, a break from reality, and an exciting new lease on life! Alyssa is getting a bit stronger each day and I can’t even get over the dramatic drop in seizures. I don’t know if it is linked to her hydration level, her med level, or something completely unrelated. What I do know? I LIKE IT!

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OK now that you have THAT song stuck in your head! LOL!

Alyssa had physical therapy today. She was beyond not in the mood. She would do things exactly once and then act like she had magically forgotten how to do them. Oh, you want me to stand up? Nah, I’d rather sit. Oh, you want me to sit on your leg? Nah, I’d rather sit on mom’s. It was, to say the least, a highly frustrating hour for all involved. She is gaining strength and control each month though and that is exceedingly obvious even on a hard day. She is about one muscle movement from getting herself into a sitting position. I know if she just does it that one time, she’ll be golden. Instead she lays in a super model pose and looks like she is ready for her bikini pics to be taken. LOL!

We go to se her GI doctor this week. I am actually pretty excited. I am hoping he will be able to help us to help her to injest more healthy calories on a day to day basis. I have been putting a tablespoon of olive oil in her night time bottle. (side note: when you begin doing something like this, please take the time to FULLY explain to your spouse. Neil thought I had replaced ALL the water in her bottle with olive oil. EWW! I could not figure out why he was so so very grossed out by a tablespoon of oil and he couldn’t figure out how I thought 4 ounces of oil in a bottle was OK! HAHA!) I figure if nothing else it may help her lessen her need for Miralax each day. She doesn’t seem to mind it and a little oil is good for you!

So, little by little! She is loving her new power wheel and getting really really good at self correcting her sitting in it ๐Ÿ™‚ Overall, it has been pretty uneventful on our end!

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Feeding therapy day! Alyssa is kickin butt in this arena. Though, really, none of us had a lot of doubt that she would eventually learn to pick upย  a spoon. I mean…really? She comes from a long line of good eaters. It was only a matter of time before she caught on. LOL.

She is eating stage three foods now with ease. Sure, some of the little bits of carrot or pasta try to make a reappearance on the spoon, butย  most of them make it into her tummy! You can feed her with her glasses on now. Impressive stuff. Ha. We are supposed to move on to other foods and see how she does. Things like carrot sticks and bell pepper sticks and she is even supposed to try cap’n crunch. That should make dad happy, because there is no way she will eat the whole box!

This weekend is her birthday party. Should be lots of fun. We are keeping it simple this year. Her first birthday was awesome but just a lot of people! LOL. This year we are keeping it small and hoping to avoid a trip to the ER after. Poor thing had such the cold on her first birthday. Ah well, we’ll call this one a ‘make up’ birthday. Afterall, who doesn’t want a second excuse to make a mess with a cupcake?

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OK. I want to go back and chart the last two years, but the reality is I may never catch up. So, I am going to start from today and then go back and add in. Those of you that know Alyssa won’t need filler, and those of you who need more can always comment. I will try my darndest to reply and get you the information you want/need. This post is going to seem a bit ‘medical’ and not ‘motherly’ but it is the easiest way to lay it all out. ๐Ÿ™‚

Today was Alyssa’s biannual IFSP (individualized family service plan) meeting. During this meeting the service coordinator and I lay out three goals we think are attainable for Alyssa over the course of a six month period. If and when she hits one, it is replaced with something new for her to conquer. We work at them but we stop the work for the day when it stops being fun. For us, it isn’t worth jeopardizing her quality of life for the outcome of slightly heightened motor control. Also during this meeting we establish where her skill set is going in. What she is coming to the table with, so to speak. That way, at the end of six months we can look back and see how far she has come. This six months was pretty astounding, truly. I guess I will start there, with the Hawaii Early Learning Profile (HELP) assessment. It is broken into five categories: Physical, Cognitive, Communication, Social/Emotional, and Adaptive. Each of those may have subcategories and each of them also has a mastery level and a scattered skill level. What that means is while she may be firm on one age level, there are certain things that she does above that ‘typical’ age range.

Physical: Gross motor: Mastery 7 months Scattered 10.5 months Fine motor: Masteryย 8 months Scattered 10 months.

“Alyssa can sit independently for short periods, using her hands and body for support, she is pulling to a stand, will balance in a stand briefly, she is crawling to negotiate the environment, transitions into prone position. She reaches for, grasps and releases objects, bangs two objects together, removes objects from containers.”

Cognitive: Mastery 7 months Scattered 11 months

“Alyssa plays with paper, slides objects on a surface, imitates familiar gestures, localizes sound, will uncover a toy behind a screen, retains an object in each hand, guides actions on toys, follows moving objects visually, likes to look at pictures in books.”

Communication: Expressive: Mastery 6 months Scattered 12 months Receptive Mastery 8 months

“Alyssa recognizes names of familiar objects and people, understands the meaning of ‘no’, responds to requests paired with gestures, lifts arms to communicate ‘pick-up’, calls out for attention, vocalizes interjections, emotions, loves music and moves to rhythm”

Adaptive (self-help): Mastery 14 months Scattered 20 months

“Alyssa is learning to use a spoon, can bring food to her mouth intentionally, she can drink from an open cup with assistance, has good sleep pattern and loves to explore cabinets, drawers and baskets.”

Social/Emotional: Mastery 17 months Scattered 18 months

“Alyssa is an active explorer, and makes sure that a familiar adult is within visual range. She has preferences in food, toys and people. She is friendly, affectionate and likes social games”

What does all that boil down to? Essentially… Alyssa… is Alyssa LOL! No, really. The easiest way to shorten it is she is a nearly 2 year old in the body of a 1 year old. It is that right there that makes me a bit more sympathetic to her frustrations. Her mind is nearly at the right level, but her body doesn’t do what she wants it to. She has a lot of motor function that is typically ‘instinct’ that instead she has to learn. Over the last few months she has grasped so many things that come so naturally to so many others. One of the most obvious is placing an arm out to the side when she begins to fall. There are a lot of instinctual reflexes that she is missing, but the blessing is she has the determination and desire to learn them.

We had to establish three goals that we felt were important moving forth.ย We wanted them to be attainable but challenging nonetheless. The first is crawling on her hands and knees with her belly off the ground. She is getting quite close to it. In fact, tonight, Neil caught her up on her hands and knees for a second with no help whatsoever. So, she will get there. We are going to start placing her on her hands and knees and turning on music to get her to sway and hopefully build up her balance and strength. I know with her once she does it once and sees how much easier it is than her army crawl… she won’t look back! LOL!! The second is standing independently. We are not pushing walking. However, gosh… that will be an amazing day! LOL! With the standing we are going to work first on getting her to pull to a kneel. Prompting her with toys placed higher and assistance. Like I said, she has the determination, we just have to give her the opportunity. Finally, communication. The third goal is to get her to nod yes and shake her head for no. Two gestures which do not involve fine motor control and that we all know she is capable of making. We are going to do mirror play, over-exaggerated shaking for a while, and just try to get her to associate them with yes and no. Right now, she has very distinct noises for when she wants something and when she doesn’t. However, the latter… is not a good noise! HA!

Overall, I think the next six months will be our best yet. Neil and I are starting this six months on the same page. We are enjoying her for who she is in this minute and just trying to give her every opportunity we can. My mind is at ease for the first time in a long time and I have a feeling that this next six months is going to be our time to shine as a family. We have a lot to undertake in the way of intervention but I know that if we tackle it together it will be the smoothest ride possible. Really, Alyssa is the “boss” of the situation. She will do everything she is supposed to, when she is supposed to. It sure is going to be fun to get to walk through it with her though ๐Ÿ™‚ .

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