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Archive for July, 2009

The g-tube is a go!

(Disclaimer: I wrote the first couple days up when we were living them, but then the wi-fi at the hospital bit it and I lost it all. So, I’m dividing these as best I can…)

The day started before it even actually began. Since Alyssa could not have anything orally for 8 hours prior to her surgery we had been bumping her seizure meds back so that I could give them to her at 1130 and we wouldn’t have to worry about them for a few hours after her operation. So, 1130 rolls around, I give her her meds, and she screams for 90 minutes off and on. Seriously she would NOT go back to sleep. Of course by the time she finally did get back to sleep I was so wound up there was no way I was sleeping. About 2 am I crawled into bed… which made that 530 am alarm clock SO much fun. We got up, got her up and dressed, loaded up the car, stopped for a pack of disposable diapers, drove through for coffee and made it to the hospital at 630. Things were by far smoother today. Still had to do admitting and such but we wound up back in the pre-op room right on time. She was in a great mood. All was running smoothly as she played in the oh too nice pre-op room filled with power wheels and ride on toys (at least softens the blow that your wallet takes LOL). Then, in walked her normally chipper GI doc and his marvelous NP (we will call her Ms. T from here on out) came into the room. I could immediately sense tension but didn’t want to jump to conclusions. Well, turns out there was a mix-up at the anesthesiologist’s office and so he was going to be late. The GI had a full plate ahead of him and it was kind of one of those ‘this is NOT how I want the day to begin’ situations. He took the time to explain to us what was going to happen (in the detail that I would have typically spared Neil and the rest of you. I was listening and silently cringing inside as I watched Neil turn away. I forget that I like to know all the details…but some of them are best left out when it comes to others LOL) and let us know how long it would take. In addition, we talked about her diet after the fact. He wanted her on elecare…now mind you… elecare is the most hypoallergenic formula on the market but also the most horrific smelling concoction ever. Also, Alyssa didn’t tolerate it by mouth AT ALL. I was nervous, made a comment, and he was short fused. It was weird because it is so not his standard temperament. I looked at Ms. T and decided to just bite my tongue, roll with it, and deal with it if it became a problem. The results of the gastric emptying test had come back… normal?! …yeah… right… ok.

So, the GI and Ms. T stepped out to prep, grab some coffee, and wait for anesthesia to get there. Luckily, when he did arrive, it was the same guy who did it for her last esophagus test. Even amidst his crazy morning (which included a speeding ticket on the way… fun!) he was still pleasant upon entering the room. Within minutes we were in the procedure room. I stayed until she was out and then waited with Neil for them to finish. She did great. Tube was in place and whats more is the esophagus was completely clear. It’s amazing how healthy it looks. The temporary PEG tube is in place. This is a bit different than the final button that will be there. The premise of this is to apply pressure on the stomach and hope that we can get it to slightly adhere to her inner abdominal wall. That way when they go in in 6-8 weeks and replace it with the button everything will be nice and healed. It has about 6 inches of plastic tube that is sticking out of her belly all the time, but once she gets all mended up it will be gone πŸ™‚ .

When she started to wake up we went back to the recovery room. Since there was confusion about how long she was staying, they didn’t have a room for her. Our recovery room stay was quite a bit maddening. At first there was a kid that would.not.stop.screaming. Then, the nurse was just… something. I had stressed that Alyssa neeeeeded her seizure meds by noon (it was currently about 1120) because I was not going to risk her having a seizure this close to a major procedure. So she comes back a few minutes later to tell us she is going on a break but the other nurse is there if we need her. I said “OK and she knows she needs her meds soon?” (haha cuz I’m evil like that). Well, the substitute nurse called Alyssa’s GI to get approval to give them through the tube and then just block it off for an hour while she digested/absorbed it. So, we got her meds in her and about an hour later it was time to head up to her room. They were giving her Demerol for pain so she was pretty groggy. Once we got settled our parents stopped by to bring sustenance and support. Ah, you gotta love parental units πŸ™‚ .

They wanted to run her on a 12 hour feed from 7pm to 7am that would give her an ounce an hour. Well, they ran from 7-830 and then she wound up wearing what had been put in. So, we shut it off and planned on restarting it after she got her meds. They began the feed at 9 and she’s asleep now… so we shall see what tomorrow brings!… or what the evening brings… LOL

A few pictures….

Pre-op. Now, remember… this is a child who has not eaten in 8 hours. It’s so silly. She is in a better mood when she has to fast than when she has to eat. LOL Gotta love the hospital scrubs πŸ™‚

Maybe my favorite pic ever. I love the blurred hands. She is getting SO pro at clapping.

and post-op *swoon*

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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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and yesterday I hit mine. Alyssa has been on clinical trial medication for going on 11 weeks. The original goal? To leave her on for 14 weeks and then do a 3 week taper off (they are corticosteroids for her throat so it is better to wean) and then begin running stomach emptying tests, trying meds, etc. The goal of this medication was to wipe out the eosinophils (white blood cells that show up when food allergy strikes in the esophagus) and hopefully make eating more enjoyable for her. A lot of times kids with the underlying condition of eosinophilic esophagitis simply don’t like to eat due to the fact that it is somewhat uncomfortable to swallow. Due to the fact that Alyssa had a quite extreme case we were all quite hopeful that it would be a helpful plan of action. However, my mommy gut tells me that there is something further underlying and that is why feeding is simply becoming more and more of a challenge. I am pretty confident that her stomach does not empty at the rate it should. It is a quite typical side effect in children with neurological problems as well as children on anti seizure medicine… Alyssa is both. So, we will run that test sooner than later and see what it reveals.

The breaking point? Feeding has been a challenge on and off from jump start. It was a struggle in the beginning. If someone had told me when she was three months old that with a g-tube in place she could still drink a bottle like normal… we would have probably been all over it. Instead, in my mind, a g-tube meant no form of “normal.” It meant that she’d simply be fed through the tube and never get to enjoy family meal time (I know it sounds silly, but I just couldn’t imagine her life without birthday cake or trying my favorite dishes). That just simply is NOT what a g-tube is about. At all. At any rate…back to the breaking. The saving grace of her feeding issues has always been that if I needed a break she’d let other people struggle and win as well. However, for the last few weeks, she just won’t give. My husband, bless his heart, is not one of those men that does not know when I am stressed. He is not a person who can sit in another room happily chugging along while he knows that I am on the verge of meltdown. He is a fixer and he wants to be able to make this OK. So, by the end of each day we wind up with Alyssa frazzled because she doesn’t want to eat, me frazzled because I don’t want to feed her or hear her scream for one more second, and Neil frazzled because she won’t eat for him and he can’t make her eat for me. The amount of strain that this is placing in our home… just is not OK. Yesterday, was the pits. I woke up already thinking “OK six more weeks and then we can get the testing started… I can do this” … until she fought each feeding tooth and nail. When she got up from a 3 hour nap I figured it would be a great time to give it a shot. I even made her chocolate flavored formula which she usually goes nuts over (by her standards) and instead she clawed, screamed and otherwise slapped me around. I finally got her pinned with her right arm behind my left side and her left arm in my left hand. She screamed for a good 10 minutes and then finally latched on to the bottle. She drank half of it. Yay. However, I knew there was no way to get the rest in her once I let go. So, I kept her pinned until she burped and then tried again. No.effing.way. She would NOT take the bottle and would NOT stop screaming. I put her down on the ground and let her scream while I laid on the couch and cried. I.was.done.

A few minutes later Neil came downstairs and oh so innocently asked if I was OK. HA. I lost it in a screaming crying over the topness and then promptly fell asleep on the couch from sheer emotional exhaustion. A few minutes later our landlord knocked on the door and I was awake. After he left I sat there and prayed for a minute. I was done. I knew I was done. I knew that Neil would understand I was done and most importantly I knew that being done would relieve so much strain between Alyssa and I. I just had to find the words. I just had to admit defeat. It is NOT an easy thing to do. This was the first time in Alyssa’s life that I had to say “I can’t” and even now it makes me emotional. It’s such a hard thing to explain. The admitting a form of defeat. The laying down and saying something has to give. This is a battle we have fought from the beginning and to feel like you are waving the white flag… well it just feels defeating. However, it had to happen.

I sent a message to her GI’s NP who we have been working with. I wanted to let her know I was trying but I could not guarantee we were making it to the end of the study. She requested I call her so we could talk. Now, I want to take the time to say that doctors in Nevada especially get a bad reputation of quality/standard of care. We have been SO fortunate in the people that care for our daughter. I am so grateful. Anyways, we have spent enough time with her that she knows my typical reactions to things. She knew I was stressed from the start. You know what I love? When I said I felt horrible, she assumed I meant about having to torture Alyssa by feeding her. I meant that we couldn’t finish the study. I meant because I felt like I was giving up. She, never saw it that way. She formed a quick plan of action and realigned our next few weeks. Alyssa’s GI is going out of town the week after next so she didn’t want to waste any time. It was amazing to me to talk to her. So often people that go through a certain level of education/life experience in the medical field grow into … not cold… but just indifferent? people. She… is the opposite. You can feel her compassion, her want to do what is best for our child, and her desire to provide Alyssa with the highest standard of care. We hung up the phone and she intended to talk to the doctor and see where he stood.

The decision? They want to place a g-tube when they go in to take after pictures of her esophagus next week. Yes, Wednesday or Friday of next week. I’m still in shock. I’m still in limbo. It’s such a cluster of emotion. Do I want to think that the tube is going to go in, she will thrive, and life will be like an awesome episode of a classic sitcom. Yes. However, there are a lot of variables. She will have healing time in which she cannot crawl, swim, etc. There is a chance that she will still spit up quite frequently (in which case they’ll bring her in for surgery and make it to where food can go down but not come back up). There are so many things to weigh pros and cons. I don’t WANT her to have to have this. However, the reality? I fear what will happen if she doesn’t. I fear how our relationship will be after a few more months of spending hours a day pinning her down to get her to eat.

I had about 100 questions flowing through my brain. So, the NP and I spoke again last night. It was after I had spoke to Neil, after we spoke to our roommate who has been there done that with her own daughter, after we had pretty much decided this needs to happen, and when I was still in emotional limbo. Did I mention this woman is amazing? We talked for a long time. I tried to explain why it was so very hard to admit this form of defeat. I felt like a failure. I am not a quitter. I finish things… well unless I procrastinate ;). She told me to take it with a grain of salt, but that it was OK to get emotional. It was OK to feel. That I didn’t have to be detached or separated from the situation. Yeah…she doesn’t know me at all. LOL. When it comes to medical stuff… from jump start I have gone cold. It is easier to pin your child to a table for a blood draw if you can shut off the emotion that typically comes with it. It’s my coping mechanism and most of the time it serves me well. However, she’s right in this instance. I have to feel this. I have to realize that this isn’t a cut and dry situation. She made the best comparison about how you need both food and air to survive and if Alyssa was not breathing properly I wouldn’t flinch to facilitate her breathing. It’s true.

After getting off the phone with her and talking to Neil I went downstairs. I know I am still not fully updated and the whole ‘roommate’ thing is missing some info, but I will tell you that she is definitely someone that anyone would be blessed to know. Raina is one of those people who can read you when you don’t even want to be read. She somehow finds the words you need to hear and delivers them in a way that you actually hear them. Her now SIX!! (Happy Birthday Madi!) year old daughter has had a g-tube since she was a little older than Alyssa. It’s inexplicable the feeling of knowing that when you tell someone something that would sound bizarre to much of the world, it is simply going to get a big ol’ nod. It is a weird feeling… but a good weird.

This is just the hardest thing for me so far. It sounds ridiculous to even type that. Alyssa has conquered so much. This may very well not be the hardest for her but it is for me. It means admitting there is a part of sustaining her life that I need some serious help with. It means admitting that I have tried everything I can and it just isn’t enough. It means a drastic life change from here on out (hopefully for the better). Overall, it means admitting a form of defeat. However, it HAS to happen. Something has to give.

I know that some of you probably have more questions than even I have LOL. You can post them in the comments and I’ll try to answer. I will put together a post over the next little bit with info. I know it’s a lot to take in. It is going to change things. I’m cautiously optimistic that it will change them for the better. The main blessing is that it is not a permanent thing and hopefully with removing the stress from the food situation Alyssa will learn to love eating and it can come out sooner than later. If you could just hold her in your thoughts this week we’d really appreciate it πŸ™‚ Thank you.

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or maybe I’ll be grateful in the long run. Either way, it needs to be said.

I AM DONE WITH FEEDING ISSUES. I AM SO COMPLETELY OVER THEM THAT I WANT TO RUN SCREAMING FROM THE BUILDING.

Whew… OK… I feel a bit better now. I know there are currently a lot of holes in this year’s updates, but the reality is that feeding Alyssa is no picnic. In fact… it’s kind of the the picnic you plan and everything goes wrong to the point where you wind up with ants in your socks and you are sick from days from the food. It has been two years of a roller coaster of feeding issues. The first bit was very “sunshine and lolipops” and a whole lot of “grin and bear it.” At this point, I am at my wits end. Alyssa’s clinical trial is over in 6 weeks and I cannot wait. We cannot alter her diet/feeding methods until then. We could pull her off, but I do think that the meds are helping to some extent so I don’t want to do that. It’s been two years…what’s another two months… right? LORD I HOPE SO!

We saw a nutritionist and she gave us ways to boost calories. It is just SO hard and I feel SO mean because Alyssa simply detests eating. It seriously takes an average of 45 minutes to an hour to get her to eat 4-6 ounces of milk on a standard day. I did the math the other day and between sleeping and feeding we are left with about 4-6 hours a day where we are awake and happy. I just want happy. Our little girl is this bright shining light, but when it comes to feeding… not so much.

So, we wait. There is a deadline. We can make it. There is an endpoint or at least a restart point. I keep reassuring myself that it isn’t that far away. The last hour before bed is the worst hour of our day. The fighting her to eat, then giving her her meds and praying that she at least keeps down enough food to sleep for the night. Give her her meds first and she fights feeding harder, and let me tell you…the meds taste like frickin cherry candy and the girl still hates it. I just loathe the fact that each night no matter how calm the day goes… 9 days out of 10 it is going to be stressful at the end. I loathe that I lose my patience and want to run from the room. I loathe that I know my husband is feeling every bit as helpless as me.

Once the study is over, I am hopeful. There are a bunch of calorie boosters we will try. In addition we will get her a stomach emptying test to see how things are flowing. Then, she’ll start on an appetite stimulator and a stomach emptying speed stimulator. The hope being that we can get it to where she FEELS hungry. I seriously don’t think she even knows what hungry is. If that fails, then on to the G-tube. Something up until recently I was VERY against. However, after seeing first hand what a blessing of a tool it is… it may be what needs to happen. It will be an icky six weeks after the operation, but if it has to happen…again there will be an end point. I just want the stress removed from our dynamic. The G-tube is not an easy or simple fix…so we want to try everything else first, but at least if the stress of meal time is removed…she may learn to love eating.

Ah I feel better now. She did so well today up until bed time with eating. I have been striving to enter meal times relaxed and confident that she will eat. Here’s hoping that combined with her strong will results in us getting through this next couple months…

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and for that I am sorry. It has been a crazy bit here. I am trying to play catch up but there is a lot to update. So, I’ll just start from this weekend and then try to move forward and back track at the same time! I hope all is well with everyone.

Well, we were all set for a nice relaxing weekened at the new house (this will be a back track post eventually πŸ˜‰ ). Our main goal? To unpack the kitchen! Then, Thursday night Alyssa didn’t keep down her last feed. Ok…no bigs sometimes it happens. Friday morning she held down her medicine milk ok. Whew. Then, we ran a bunch of errands, came home and I fed her her second bottle of the day. I put her down for a nap and she slept soundly for about two hours. I was outside unpacking with my roomate and her friend when Neil comes and asks for help. She managed to sleep for two hours and then wake up puking. OK ok… get her cleaned up. Feed her again. Same thing. Frick. K. So we switched to pedialyte. No luck. OK lets just wait a bit and see how she does. Stil heaving and then there was the high pitched cry that said “OWWWWWWWWWWWWWW.” Usually, I’d give her a couple days to work through it, but she’s on an oral corticosteroid right now (also another post LOL)Β which knocks down her immunity. So, I put a call into the doctor… “Bring her in if she doesn’t keep down her night time meds” … she doesn’t.
We get to the ER at about 10 and by 1030 she is hooked up to a hydration IV and having a bunch of tests run. Her WBC count is way up (which is pretty normal for her) but they don’t want to over look a UTI. 3 hours later all the results are back and they discover via x-ray that she is pretty constipated. Get that cleared, run IV antibiotics, and home we go. Except we have to go back on Saturday (yes the fourth of July) to get the second dose of antibiotics. Sounded good at the time. However, it didn’t dawn on me that they are billing seperately for each ER visit or I would have had them admit her because it would have been cheaper and we could have got more sleep LOL!
At any rate, we went back Saturday and waited 2 hours for the 4 second shot that she probably didn’t need anyways… but that is neither here nor there. She hasn’t gotten sick since Saturday morning and after having sunday as a full clear liquid day managed to keep down formula on Monday. She seems back to her old self aside from the typical reactions to antibiotics. Here was the adorable girl waiting patiently at the ER on the fourth of July. She’s getting so big πŸ™‚ . The dress was made by a friend of mine named Lisa. My friend Kim purchased it for her daughter back in 2007 and Alyssa got to wear it in 2008 and 2009! Yay for longevity!

Fourth of July

Fourth of July

The saving grace? The part that made the whole weekend worth it? Alyssa learned to clap!!! We were snuggling on the couch saturday morning and all of a sudden I glanced down and she was clapping.Β It is amazing that she figured it out and adorable because it takes so so much concentration for her and she looks like one of those old school monkeys with the cymbals. Each day it seems like it takes her a little less effort to remember how to do it. I seriously still get teary eyed when she does it. It is such a HUGE milestone for someone with the type of brain abnormalties she has. She is just growing by leaps and bounds. I am amazed by her constantly. Here is a video of a few of her awesome talents πŸ˜‰ to tide you over until I update!
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