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Archive for the ‘G-tube’ Category

Usually throughout the day I kind of “rough draft” a blog post in my head. Actually, if I’m being honest? There are far more blog posts stuck in rough draft mode in my head than I have ever actually found the time to write. However, the typical thing that first pops into my head is a title. I don’t know why but after I start to formulate our day that is what rises to the top…oooh and then it is ACTUALLY at the top. Ha.

Today? All I keep thinking is “No.Frickin.Way.” …but I didn’t feel that was an appropriate title. I didn’t feel that it gave the appropriate amount of weight to what today encompassed. Not to mention? It doesn’t envelop the … gosh. I don’t even know that I have a word to express the level of combined excitement/joy/hope/pride/etc that I hold in my heart at this very moment. I just keep thinking “No.Frickin.Way.”

As I started to formulate this post my mind went back to three months and eight days ago. I sat across the desk from Dr. Tish and received the news that our daughter was potato and soy intolerant. I got that news just after I hadΒ  to ask for a towel to clean up the vomit from my child’s shirt… just after I had seen a look of compassion, concern, and worry rush over a near stranger’s face at the sight of my child choking and fighting to catch her breath. Three short months ago I packed extra blankets, waterproof pads, and extra changes of clothes. Our days revolved around trying to get her meds in her at just the right moment so that she would keep them down and hopefully tolerate enough of a feed to where we weren’t concerned for the day about her hydration.

What amazes me the most looking back? Is how much I didn’t realize the strain that was present. For us? It was our “normal.” It was all Alyssa had known. I woke to the sound of her gagging daily and just figured it was how things were. We stripped sheets daily and had just factored it into the daily routine. We planned when to feed her, tried to get a quantity that would stay in for car rides, and overall? without even REALLY realizing it? We were in constant “wait” for the next time she’d vomit. . . and we didn’t even realize it. It was just how life was…. until it wasn’t that way any more.

September is a blur. There was a lot of the “worse before better” that came with trying to dial in her diet. The vomiting increased. It was harder to handle because it wasn’t laced with the smell of vanilla. There were calls to Windrose for advice. There were moments of worry. There was a time when we wiped her intake down to just coconut water because she wouldn’t tolerate any thing else. There were moments when Neil and I lost it together after she was in bed. There were days when I wanted to give up. When it felt TOO HARD. When we’d go to the chiropractor… do the NAET (http://www.naet.com/) testing and find out we had to cut out something else for a day… and I’d want to throw in the towel. Instead? We stuck it out. We muscled through. Alyssa once again showed us that if we are willing to put in effort…she’d not only match it but she’d surpass it as well.

September faded into October and October into November. It was a trying few months in many ways. November is for some reason always an emotional struggle for me. I don’t quite know why… but it seems to happen that way. However, over the course of those months something amazing happened…well somethingS amazing. Alyssa is not the same weak little girl who sat nearly lethargic as I got the news that day at Windrose. Alyssa is not the same little girl who had to be slowly and gently fed so as to keep her from vomiting. Alyssa hasn’t woken up gagging…in…well… I don’t even remember the last day. If she spits up now? It is just a tiny amount.

At any rate… as you can tell… all of this stuff has been gradually changing even if rapidly. So … why am I so speechless about today? Why am I without a title for the events of today? Well… it is a day that I didn’t think I would see for a *very* long time. It is a day that I honestly didn’t know if we would ever experience. It is a day that I for certain would have never placed in 2010. It is a day that once again showed me what a determined and strong little girl we get to spend our days with. What happened today?

Well… Alyssa did not receive any food via her g-tube today!! Not.one.bite. She ate 100% of her food calories off of a spoon. What’s more? SHE ENJOYED IT! She lights up when you say “Do you want to eat?!” and she actually stays interested until the bowl is empty! Of course she still got her supplements, medicine, and liquid via her g-tube. However, she consumed 30 fl oz of purred food off of a spoon today. Now… say it with me. “No.Frickin.Way!!!!” πŸ˜€ I just cannot even begin to put to words the emotion that it fills me with. Maybe after a couple of days I will be able to, but probably not. I am *so* proud of her. So very VERY proud. Also? I’m so EXCITED for her. I’m simply THRILLED for her that for the first time in her life food is not a source of pain or discomfort. I’m elated for her that she’s gone a long enough time without food causing her pain that she can actually enjoy meal time. Finally? I’m a bit…ok a LOT… excited for Neil and myself. It’s just…well…EXCITING!!! I’m hoping that today is just the first of many to follow!!! ❀

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Well, Friday is over…

and I guess that means we survived another week. Although, judging by the calendar tomorrow is still part of this week… and… really? We have physical therapy in the morning. However, after the last five or so days I’m going to go ahead and call that the end of the week and start over tomorrow. I am quite a bit behind in updating, but not *as* behind as it seems. I’ve been writing like it’s 1999, retro-style, with pen and paper. HA! Who knew my penmanship is actually still legible? It started on Monday when I was having a rough morning and decided to take a few moments at the park with my coffee after dropping Alyssa off. It continued through the school week with me sitting in the sunshine for a while while Alyssa was at school. That vitamin D stuff must be *amazing* because it truly does adjust my mood.

At any rate, back to today. I’ve been trying to add new stuff to Alyssa’s diet on Fridays so that we have the three days with no school to make sure she’s tolerating everything OK. I spoke to Windrose yesterday and told them she’s still producing way more air than I’d like to see. We decided to up her quantity of “50s,” which are genitian and skullcap, to see if that will curb the excess gas in her tummy. She did sleep until 530 am this morning so perhaps it will actually curb that bloated tummy feeling. This morning I finally made her the protein/veggie enteral feed recipe. Much to my surprise? She tolerated 8 ounces of it prior to her nap. Yes. 8 OUNCES. AKA nearly 200 calories. Of course, the day quickly turned from fab to drab when I laid down to nurse a headache only to be awoken 5 minutes later. Ever had that happen? Yeah…makes the headache a LOT worse. So, I decided to give her a feed and then hand her off to daddy to go try to take a nap again. Only, of course it wasn’t that easy. This feed came back up since mommy got overzealous and gave it to her too fast. Joy. Ah well, after some tears were shed by both of us I went and laid down and Neil redid the feed. She spit up a bit but not nearly enough to count. Later on she got a “snack” of the fruit/grain recipe and then just before bed another 8 ounces of the protein/veggie one. Overall? We are for sure moving in the right direction. She is keeping down more than she’s not and her muscle control and alertness are improving daily.

I want to be all sunshine and lollipops about it but the reality is… it’s not all sunshine and lollipops. It would be GLORIOUS if a doctor could say “Oh do this, and every little thing will be OK!” However, that just isn’t going to happen. There are *so* many stinkin variables. I feel like we are on a rollercoaster and really? I’d just kinda like to be floating in the lazy river for a bit. Between the headache and the puke today I kinda wanted to run away from it all. It’s just so much sometimes. The math, the having to make everything in fear that something will have potato or soy in it, the thinking about everything she’s getting, everything she’s missing out on by puking it out, etc etc. It just gets overwhelming and mind-numbing at times. I break down, cry, and just want it to be freaking “EASY” for a day. I think in my head “THIS IS NOT FAIR!” and then I hear my mom’s voice echo back and say “Honey, life isn’t fair… who ever told you it was? Lied to you!” and roll my eyes a bit. It’s true though. We are all just playing the hand we are dealt and sometimes I’d like to just fold and walk away from the table. However, at the end of every day I am so so grateful for my little family unit… even if I don’t so much show it for a few hours during that day. πŸ˜‰Β  Luckily when I get like that Neil is here to balance things out. I ran away for an hour and came back ready to handle things…sorta. That headache was kicking my butt. My mom dropped by for a bit and rubbed my shoulders while I fed Alyssa. Ah, moms… they really are great. Especially mine. She’s the perfect mom for me. Seriously. No one puts me back in my place quicker or with more honesty than my mother. Even if sometimes in the moment I don’t want to listen to what she has to say it always winds up echoing back later and making me go “Dangit! She’s right.” HAHA!

So, today was a rough day but for emotional reasons more than physical. Alyssa was in a better mood than she has been the last couple days and was moving around like crazy. Her head butting has decreased markedly and she’s trying so hard to sit on her own! Additionally if you prop sit her in front of a toy she’s holding her balance for quite a while which is awesome since she’d lost that skill for a while.

It’s things like this that remind me we are on the right track. We are making the decisions daily that are giving her the best life possible. We are taking it day by day and considering the variables that each day presents. They are definitely good reminders on days when I feel like everything is out of our control. I know in my heart of hearts that we make decisions together that make this little girl’s life the very best it can be… even if in the moment it is hard for me to focus on that. It’s hard to see past the day-to-day struggles. However, she’s so much clearer and more alert now than she was just a month ago. The last month has been a struggle and I’m sure there are going to be struggles ahead. I’m also sure there will be amazing days ahead. I’m so grateful that we muscle through the challenging days together as a family and then get to take the time to rejoice in the good days together. I know that soon we will find a new and better “normal” than the old one we had and all of this will just be a blurry memory. People said that about the NICU and I remember thinking “Yeah, right.” but you know what? They WERE right. Those days all run together in my mind like a movie on fast forward and one day these ones will too. So, I’m going to work on continuing to take one day at a time and work on remembering the GOOD parts of the days and letting the rough parts of the days fade away. I think that’s important because when I am looking back on it in fast forward later I want to remember the giggles, the babbles and the triumphs before I remember the other not so important parts of the day. πŸ˜‰

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I am going to own up and start writing more. I am going to make it a priority. I am sorry it has fallen by the wayside. October through January are typically the hardest months for me. I struggle with Alyssa’s birthday approaching. I know… mean. However, I just know it is going to encompass seeing way more specialists than standard, answering way more questions that I want, and having her “measured up” to the world around her. That’s all well and good. It just takes a bit to mentally prepare myself. I get a bit closer each year and this year after some soul-searching and heart to hearts with people I love I’m actually in a pretty darn awesome place.

I cannot believe I’m going to have a three-year-old in less than two weeks. People tell you the time will fly. We even used to say driving home from the NICU that in a few years it would feel like a blink. However, when you are living it…even when you are saying it outloud… it is hard to believe. Until one day you wake up and your tiny baby who was so helpless and hooked up to a ton of machines is now rolling, climbing, crawling, babbling, demanding her way, and making sure there is not ONE person who doesn’t know what she needs or wants. Ha! Her developmental specialist has said a few times that although Alyssa cannot talk? You would never wonder what she wants.

I should probably use this post to bring every thing up to speed and then just roll forward. That is probably easier than trying to backtrack at this point since I have been slacking for quite some time. I’ll break it into categories to make it easier to write and read.

Let’s start at the top and work down πŸ˜‰ . Ha. Neurology. Alyssa’s seizure activity has remained nearly nonexistent since getting all of her meds, all of her nutrition, and not having nearly as many emotional spikes now that we have developed “communication.” The seizures she has now are different from the ones she had before. She used to just kind of fade out for about 10 seconds (strangers just thought she was snuggling into mommy or daddy πŸ˜‰ ) and then pop back like she was never out. Now, they are kind of trippy. She’s only had about one a month but they start with either her tongue or her eyes twitching, then go to her right hand, and then her right foot. It’s a gentle twitch and they last about a minute. She has had a couple awake and it’s a weird thing to watch because if it is just her hand and foot going, then mentally she is there. She has actually seized and never taken a break from the toy she was playing with! The neurologist has told me that these are neither better nor worse than the seizures she was having before. However, it does indicate that she probably has a centralized lesion on the left side of her brain. This? Explains a ton! Why she is struggling with walking, talking, etc. I asked him if he thought it was something she could overcome and he said something to the effect of “I can’t even guess. This little girl has surpassed every.single. expectation I have ever had.” That? was good enough for me. It was a good reminder that although she is approaching three and not outwardly a three year old … she has come a LONG way!

OK, next up is vision. Her eyesight has not changed a lot. She has learned to take her glasses off which although impressive… is frustrating. Ha! We have to take them off when we put her in the car or they become her favorite toy as soon as she knows we can’t get to her (yeah… she’s not smart… at ALL). We were going to try patching for a bit but as it stands her eyes are leveling out without it so we aren’t doing it just yet. We figure glasses with no patch is better than her ripping both off!

I suppose speech should be next on the list. We wanted to make sure she was getting all the opportunities she could so we took her to the dentist. Her teeth aside from one of the front ones are cone-shaped. We wanted to make sure they weren’t causing pain, difficulty chewing, etc. The doctor said although they are an odd shape… they are in great shape. I was definitely relieved about that. After all with all the spitting up she has done over the years… at least some of her good teeth genetics came through! With that, we persue speech. Alyssa has knocked me into place with her vocabulary. It consists of three words that we know she can say: Daddy, Hi, D.T. Who is D.T.? Oh, just our dog. Yes my daughter will proudly call the dog… and not say mama. I’m cutting her some slack since the “m” sound is so much harder to make, but still? she’s a turkey! She did make the “oggy” sound as the dogs ran by one day which made her developmental specialist quite pleased. She is definitely doing more sound play lately … and some of it is not whining πŸ˜‰ .

Coupled with speech is feeding. She still doesn’t so much care about eating. She’ll do it. Especially at playgroup. However, she just doesn’t care if it ever happens. Luckily the tube has seved us well. I’d venture a guess that she’s at just about the 25 pound range which is quite an improvement over where she was last July. She’s definitely thriving. She still spits up quite often but we’ve figured out ways to minimize it and unless it is a situation where she is gagging… it’s just our “normal” LOL.

Hmm, what’s next? Muscles I suppose would be a good way to group all the rest? Alyssa got her wheelchair so that she can go on the bus when school starts. Let me say right now so that you can exhale and not get all tense. THIS IN NO WAY MEANS THAT SHE WILL NEVER WALK. Is it a possibility that it may take her more years? Is it a possibility she *might* never figure it out? SURE! However, the reality is now, in this moment, no one is saying it will never happen. Right now, they are saying she can’t climb the stairs to get on the school bus and she needs to have means to get on the bus. We could have gone with a special needs stroller. However, the wheelchair provides a lot more adaptability and long term use. It requires less battling with the insurance later ;). In the same vein, we were able to sneak onto Shriner’s list right around Christmas time and Alyssa gets her very own leg braces this Wednesday!! She has had hand me down ones that we are so grateful for, but they are pretty big. In addition her physical therapist brought over some knee immobilization braces that we put on her with her AFOs (ankle braces) and it lets her get a GOOD stretch of the legs. This has actually enabled her to stand up for a few seconds with the braces on! The funniest part for me is that she still crawls with her ankle braces and the full leg braces on! Talk about crazy upper body strength. LOL! There is no wayΒ  I could drag my body with just my arms unless it was an emergency. Alyssa does it like it is no big deal! Finally, we got her gait trainer (like a big complicated walker) approved through the insurance. However, coupled with a HUGE deductible this year… it is going to wait a couple months to be ordered.Β  I’m not tooo worried about it because I know her school will have plenty of stuff and she’ll have enough on her plate without it for a bit.

School is the next and final topic. We go Monday the 8th to figure out what services they are setting her up with. I’m going to attempt to get her into the same school as my roommate’s younger daughter. The people there are awesome. If not, I know that she’ll thrive no matter where she is. We’ve been going to a special needs playgroup on Fridays for a few months now and she LOVES it. What cracks me up is she is the only kid in group who cannot walk and I don’t even think it’s dawned on her that is different. There is one little girl in particular who I adore because she adapts to Alyssa without even thinking about it. She doesn’t treat her like a baby but does things the way Alyssa does so that she gets interaction that is just on a whole different level. Sometimes quite literally πŸ˜‰ . If all the kids are running to do something and Alyssa is crawling? This little girl gets down and Army crawls with her. I. LOVE.IT. At any rate, school is coming! She will probably start February 15th. We *could* start her ON her birthday, but that just seems a bit mean. “Hey, Alyssa, you are three now… off to school.” HAHAHA! Ah well, I think a Monday is an easier day to start anyways. I’m excited. I know I *should* be sad and emotional about my baby going to school, but I know it will be great for both of us to have a regular break from one another. I plan on using that time to sew and get back to stocking my online store. I’ve been doing custom work for a few weeks and had really forgotten how much it feeds my soul to have something that is “mine” and have “my time.” Plus, I know our evenings together as a family will be awesome since the days will be apart. I cannot wait to see how much she picks up this year…and hopefully it won’t all be germs and bad behavior πŸ˜‰ .

I suppose that brings everything up to speed. I’ll try to get pictures up this week. She really is turning into a gorgeous lady. She has lost so much of her baby look. She’s growing up I suppose πŸ™‚ . At least she still lets me snuggle her… although she’s starting to fight it! If you made it this far… thanks for taking the time. I’m excited about what this year will bring for all of us. It’s going to be a lot of big changes but that has yet to slow any of us down 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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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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Here goes nothing!

Although, I suppose the title “This changes everything” is also highly appropriate. We are locked and loaded for tomorrow. All that is left is going into Alyssa’s room in about an hour and giving her her seizure meds (I bumped them back so that we can give her her AM dose at noon tomorrow after things settle down some). I have spent the better part of the last few days on the phone. Some of it maddening but most of it calming. I am so grateful for the people we have been blessed to walk through day to day life with. I have a lot on my mind but not a lot of time to sit here and write so I’m going to try to hit the vital stuff and leave the rest for when I have time over the weekend.

They decided today that instead of sending her home right after they put in the tube that they will keep her until Sunday. I am actually pretty grateful for this. I wanted them to keep her for a day and they were confident we’d be OK going home. However, the doctor decided with it being the weekend it would just make things a ton easier on all of us if we knew we had help when needed. Her pain will be properly managed. We will know that the tube is working properly. We will have extra hands and have all our bases covered. Furthermore, I’ll admit I’m a bit excited because every other time Alyssa was in the hospital she had pneumonia and couldn’t play with the other kids in the playroom. This time she’ll be able to have a blast. Sure, it will be a super spendy couple days, but overall I’m just a bit more relaxed about the whole situation.

I went back and forth with the people who will be delivering her pump, feeding bags, formula, etc for a few hours today. We were trying to get everything lined up so that we knew how to use the pump when we brought it home. Trying to figure out how much formula has to be ordered monthly and establish what our copay is looking like. The irony? Since the formula is now considered a medical treatment and not food since it goes in the tube… well… insurance pays for 80% of it. ha! So, even with all of the other incidentals that come along with tube feeding we will essentially not be altering her food budget. Thank you loop holes! We wound up deciding that they will deliver the stuff to the hospital tomorrow so that they can show us how to use it (even though we cant use it IN the hospital) and that way we won’t come home Sunday and not know what is going on. Sweet.

My roommate is awesome. Seriously. As soon as things calm down I need to go back and fill in. However, I will say this. She’s in our lives for so many wonderful reasons. I adore her. At any rate, this evening she switched out her daughter’s g-tube and I got to watch. What.A.Relief. Totally doable. Essentially the “button” is on the outside and then there is a balloon that is filled with water that holds it in place on the inside. So, you drain the balloon. Slide the old one out. Slide the new one in. Fill the balloon. Voila! Shiny new button. Sure, a bit of tummy acid leaks out, but nothing terrifying!

A few questions that I should answer here so that all the answers are here for everyone because a lot of people are wondering a lot of the same things! Can she still eat by mouth? Will she be able to take the tube out if she gets to where she is eating enough by mouth? The answer to both? YES! The great thing is it doesn’t change anything about her mouth. What it DOES change is that she doesn’t HAVE to eat by mouth! My true true TRUE hope is that eating can be fun! She will be getting all of her calories that she needs and the other stuff will just be a bonus! A couple more questions? Is it painful long term? Will it be catastrophic if she rips it out? Nope and no! It heals much like a piercing so that it can move around but it is healed in the area. The only thing that would make it bad if she pulls it out is if we don’t get one in quick enough. It only takes a matter of 4 to 6 hours to fully close! (which is good at the end when you WANT it to close!) It is important if she does pull it out to get it replaced ASAP. Which leads to another question… what if you are watching her and she rips it out? Don’t panic πŸ˜‰ If we are close, just put gauze over it and give me a call. If we are far away? The closest hospital can fix it all up! So, no panicking about sitting πŸ˜‰ As if I’d let you off that easy. Ha.

So, it’s go time. Everything is in place. I am a bit excited at this point. Not that this is something I want, but that this is something I know needs to happen. My mother has a way with words that continually puts my mind at ease. When I told her it was the first time I couldn’t do something she said something to the effect of “It’s not that you can’t, if this was the only way to feed her, you’d keep doing it. It’s that you are saying you realize this is not the best possible option.” From that moment, I felt at peace with so much that had been overwhelming me. It’s true. pinning her down repeatedly during the day to get her to eat is not healthy for anyone. I am excited about the prospect of Neil coming home to his daughter smiling at the table playing with food instead of walking through the door to a frazzled family. It’s going to be a stressful few weeks as she heals, but I’m hoping in a month…. there will be many more smiles at the dinner table πŸ™‚ .

Thank you so much to everyone who has held us up in this time. You will all never know how much your kind words mean to us. How much just knowing that someone outside of you is thinking fondly of your daughter in a time when what she truly needs is positivity. Well, you may never know how often it puts my mind and heart at ease. So, thank you for that πŸ™‚ . I should be able to update from the hospital, but if not I will be sure to do so on Sunday!

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you know the one between parenting and advocating? The one that allows you to manage your child’s medical needs while still meeting their emotional needs. The one that permits the store of dates, times, appointments, etc while still allowing you to squeeze in play time during “free time.” Some weeks… it’s easy. Some days? It is damn near impossible.

Today? One of those damn near impossible days. One of those days that I spent the better part wanting to curl up in a ball, change my name, and sleep until tomorrow. It began with a “I actually need you, I am not just wrestling against sleep” kind of cry from down the hall. Of course, upon entering, the sheer aroma of the situation was enough to send me immediately downstairs to get wipes and a fresh diaper. OK, drama one of the day corrected. I needed a few minutes to regroup and fully wake up so I plopped down in front of the computer and set her up with some toys. Great. Phone. So much for that relaxing time.

Who is it? Ah… the hospital. Calling to set up a gastric emptying test… for 1 pm today! Which, is great news because it will let us know about what is going on with Alyssa’s stomach. The not so great part? Nothing by mouth for 4 hours prior… it is 915 now. Get permission to give her breakfast and meds if I haul it. Get that done, get the morning squared away, and load into the car. Did I mention that I need to get my tush in gear and get a new belt for the AC in my car?… well I do! So, we make it there all nice and toasty warm and make our way to admitting. The lady looks at me as if I am from another planet when I tell her that we have an emptying study to be done today. OK. Fine. It was only booked 4 hours ago. Finally, 20 minutes later we are nice and cooled off and get brought back. To MORE confusion. The way I see it they were confused as to what was today and what was Friday. Blah Blah we get it all squared away (or so I think) and Neil shows up just in time to walk with us to surgical waiting. Except then surgical waiting tells us we have to walk across the parking lot to the diagnostic center. Ummm… k? So, we head out to walk but as we enter the lobby we hear our last name called out from behind us. She brings us back to admitting (yes the place where we started). Apparently there are some serious wires crossed because they are still talking blood work. So, I take the orders that are for Friday off the top of the stack and tell them that all that is being done today is the emptying test. A few women go back to the back one saying “They don’t do the emptying at the diagnostic center”…So, the lady that originally started our paperwork comes out and hands it to us and says “Alright, head on over to the diagnostic center” … to which I quickly rebutted “The other woman stated they don’t do this test over there” … at this point my head is beginning to boil and Neil is giving me that “Please don’t get all crazy” look LOL! So, she tells us where to go and gives us vague directions. We get lost. Fun. Find a sweet lady to show us where to go. FINALLY.

Should be game over begin test… right? nope! HA. They need her to drink a radioactive cocktail so they can watch it filter through her system. The catch? They need her to drink 5 ounces in 5 minutes and they want it to be apple juice. Come on… laugh with me for a moment… hahahahahahahahhahaha. Whew. OK. If I could get her to drink random juice that quickly we wouldn’t be at the study. So, we convince them to let it be her formula. I turn baby einsteins on the iPhone, say a quick prayer, and beg her to just chug the bottle. She totally did. The test itself wound up going AWESOME. It is 90 minutes on her back, wrapped up, with a big flat camera about 8 inches from her face. I was actually shocked she didn’t go into panic mode when he lowered the camera thing down. She slept for almost an hour of the test and hardly wiggled at all.

As frustrating as the day was at least the test went off without a hitch. For that, I am grateful. My hope is that between now and Friday we get every detail pounded out so that we know what we are walking into. There are a lot of small things, but at this point I’m confident it has to go smoother than today! LOL!

Here’s a pic of her studying what was going on πŸ™‚ She did so awesome even amidst the crazy of the day! She’s such a freaking trooperette!

Gastric Emptying

Gastric Emptying

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