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Archive for August, 2009

New do for the new you!

Well, this last few weeks has been a whirlwind of changes, growth, and so many other parts of life. Alyssa’s over all appearance has become so much more vibrant. Her hair was even glistening…well most of it. She has had a couple trims but never anything substantial. As I looked at her from across the room yesterday her hair looked like it was in a short bob the way it was tucked under her ears. The gears in my head began to turn. It had just gotten to the point where she had to wear it up because it was so straggly at the ends. This morning as I plotted bath time I wondered how Neil would feel about me cutting it. I sent a text that read “You OK if I cut Alyssa’s hair?” to which he replied “It grows back.” … OK then… here goes nothing.

I gathered the bumbo seat, the DVD player, a bucket of toys, etc. I knew from past experience it would be like cutting a moving target LOL. There is no point in taking her to a stranger though because I know full well that a stranger touching her head would be enough for a complete meltdown. Overall she moved a lot but pretty predictably. She leans to the right when sitting in the bumbo so it took a bit of time to get the angles right. At the end of it? I am quite pleased with how it turned out πŸ™‚ The best part? She was able to wear it down today because it is the thicker part of her hair and it is SO shiny!

Without further ado… Before

What you cant see is that dry the ends are all icky

What you can't see is that dry the ends are all icky

Funny little girl before!

Funny little girl before!

And….AFTER!!!

OH SO EXCITED!

OH SO EXCITED!

Sooo cute!

Sooo cute!

Model in training...HA!

Model in training...HA!

Side shot..oooh look at that shine baby!

Side shot..oooh look at that shine baby!

And this next one is a feat in and of itself. She will actually stand for brief moments now while holding on…until she realizes you are not helping. She was so wrapped up in what she was doing after I propped her up that she totally stood for long enough for me to catch a picture. It’s one of my favorite pictures ever πŸ™‚

So, that is that. A day of huge change and to top it off…huge accomplishment. She had physical therapy this afternoon and rocked it hard core. She sat up for quite a few minutes, cooperated with the therapist, and overall showed that she is not messing around. The PT brought over some leg braces to try before we get the order placed for hers to see how she does with them. I seriously cannot get over how much has changed in such a short span of time. Every day I am so thankful for the people that walked into our lives in such a rough time and somehow made things seem manageable. There are so many people that I don’t think we could have made it through this without. I am so so eternally grateful to have been surrounded by so many amazing people during such a life altering time of our child’s life. Thank you all for being here πŸ™‚

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Well… we are πŸ˜‰

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 πŸ˜‰ ). 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 πŸ˜‰ ). 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 πŸ™‚

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 πŸ™‚

What should be Chuck Es new advertisement LOL

What should be Chuck E's new advertisement LOL

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Sorry, that was all I could think after a day like today. Sure, it was boring by all standards. Sure, it involved a 3 hour trip to the GI. Sure, it involved nursing in the house.

However, it ALSO involvedΒ  our daughter weighing 9.3 KG… now for those of us who go by pounds? That is 20lbs 7ounces!! That? Is a 12 OUNCE gain in 11 days!!! She has not gained that much in 11 months! I cannot even believe it! She is doing so so amazing. Even amidst what seemed like a dramatic week. She is just thriving!!!

Have I said it already? Hardest decision ever but also one of the best we have ever made. I cannot believe how much has changed in less than two weeks. I wish more people knew about the reality of a g-tube instead of just seeing it as the end. I wish that people could see my child, who used to spend hours a day screaming at meal times, happily getting pushed around in a stroller while she eats. I wish they could see her getting a chance to play with food. To touch, taste, squish, etc. A chance to do all that without her mother panicking as she tries to calculate how many calories are actually going into her. I wish people openly talked about the fact that it does not take anything away from a person to have a g-tube placed. A g-tube simply gives an additional way to take in food. It gives us a chance to stop making food about force and start letting it be about FUN! When my child has 520 calories before noon strikes, then I don’t have to worry that she is short on nutrition. I can let her play with her food and take it as something she is controlling. Seriously? This was just what we all needed. I only wish that I knew more sooner. I only wish that I could see the future. Just a peek. If this last 11 days is any indication of what’s to come… well I am pretty gosh darn excited!!

There are still things that irk. Like the smell of tummy acid. LOL. Thank goodness Ms. T hooked us up with an awesome attachment for her tube today so the syringe stays in place. Our GI appointment went well. She can take a bath again which is exciting. She is healing well. We should be able to have her ‘button’ placed in about six weeks. That way she can get back to crawling. Meanwhile? She is doing so well about not being able to crawl around. She spends time in the stroller, the high chair, our arms, etc. Overall, she is well occupied and I think just so happy to have a full and settled tummy. I cannot wait to see what the future has in store for her. I seriously think this will be the time we look back on as pivotal in her development. For the first time in a long time… she is getting everything she needs … and not having to put up a fight to get it πŸ™‚

A few pics from the day…

Brunch on the go with Cait πŸ™‚ . The Teal/Beige square that is attached to the stroller is her pump. It gives her the amount of food we set it to in the amount of time we set it to. For instance, during the day she gets 4oz in an hour, but over night she only gets a bit more than 1oz an hour.

Thank You kisses for Cait

Thank You kisses for Cait

Heading out to the GI :)

Heading out to the GI πŸ™‚

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Wow. Well, I suppose there had to be a “OH MY GOODNESS THAT NIGHT WAS HORRIBLE” night at some point. Last night? WAS IT. I crawled into my cot on Alyssa’s floor later than I should have. Got all snuggled in. Fell asleep for about 20 minutes. SCREAMING. OK OK… burp her, vent her, back to sleep. 20 minutes. rinse.lather.repeat.

The problem? The extension that was hooking her tummy tube to the syringe had a leak in it. So it kept dripping. Fun. OK… so I’ll hook the syringe directly to the tube. Even MORE FUN! She wiggled a bit and it came undone. Oh.my.goodness. OK, get new blanket to put under her. Happens AGAIN. At this point my patience are shot but I’m trying to remain calm. Doesn’t work with her screaming like a mad woman. So, I break down and go ask Neil to take care of it. I went to get motrin. Came up. Dumped it in the syringe, chased it with water…and YEP! You guessed it… pops off. I.lost.it. I was on next to no sleep, aggravation, and done done done. I cried I stomped my feet and Neil sent me to our bedroom. I cried myself to sleep only to wake up a couple hours later to the sound of her gagging. So, we get her all taken care of, get her meds in her, done. Thank goodness it is Sunday.

We all had short fuses due to the lack of sleep. Tempers were on edge. We were all just umm a *bit* cranky. There was stuff that needed to get done but no desire to do any of it. There was no way to get the new extension so we pondered how we were going to handle tonight. Finally, at about 130, Alyssa went down for a nap… and so did we. All three of us slept from about 145-515. Thank goodness. It was exactly what we all needed to maintain sanity. We got up and headed out to get my tire fixed. It was a good test run. Alyssa has a ton of appointments this week and I will admit I’m a bit apprehensive about having to vent/feed/etc her in public. We managed just fine.

As far as the feeding we decided to just hook her straight up to the pump tonight and see what happens. We are hopeful that it has been long enough that she will be able to tolerate it closed. It cannot be worse than last night!! LOL!!

Amidst the drama day… I did manage to get an adorable picture of two of my favorite people πŸ™‚

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Day 8? Did not get updated for two reasons. 1. Alyssa LOST her MIND at bed time. I’m talking meltdown, scream like you are insane, make your parents want to run to the closet and cry breakdown. 2. Raina and I went out for a bit after we finally got the kids in bed!!

So… #1. That was fun. NOT. Alyssa was screaming in pain. I could not find the T3 ANYWHERE. Luckily Ms. T is my savior and replied quickly to a text telling me I could give her motrin at this point. YAY. Motrin given, she cried for another little bit… and she was OUT. This all would have REALLY sucked. Except for the fact she ate 840 calories! That is only 160 away from our ultimate goal! HUGE! So, although the last 30 minutes of the day were nerve wracking… the overall day was good.

#2. Raina needed a night out. Neil was game for playing ‘night watchman.’ We headed out. It was so nice! There is a little bar about a half a mile down the road and we had been wanting to go. It was nice to step out of mom mode a bit for two nights in a row and still know that Alyssa was well taken care of. We got home in the wee hours of the morning and headed to bed. Good stuff.

Overall day 9 was pretty uneventful. We all just kind of had a lazy day.Β  Movies, spicy food, etc. It was a good start to the weekend. I’m starting to get excited for weigh in on Monday. I can tell Alyssa has gained weight. I just cannot wait to see how much. It’s going to be awesome if she breaks the 20 lb mark. She’s done it clothed before but never all by herself. Always just a *couple* ounces shy. LOL. Ah well, it’s Saturday night. Here’s hoping it’s a good one!

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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 πŸ˜‰ .

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 boundsΒ  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 πŸ™‚ . 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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Holy crap! Today was pretty much awesome. She kept the meds in. She kept the food in. I mean REALLY. She took 16 ounces during the day and 12 ounces over last night plus an additional 25 calories from a supplement. What’s more? She only refluxed slightly and as we get her vented really quickly the bubbles just come out that way instead! I cannot wait until the bubbles slow down!

She is so happy. I’m loving it. You can see a sense of clarity in her that wasn’t there before. What’s more is that her seizures are lessening a great deal. She used to have about 20-60 a day and now it seems that she is down to less than five in a day. Her body is a bit more relaxed and she is moving more. It’s an amazing transformation to watch. Her belly is noticeably growing with each passing day. It is seriously going to be bizarre when she gets chunky…oh did you hear me? I said WHEN. LOL. I know there will be ups and downs in all of this, but each day I realize that as hard as the decision was to make… it was one that NEEDED to be made. She is thriving. She is happy. She is relaxed. She is amazing!

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