Archive for the ‘Medical Appointments’ Category

So, we had our initial appointment today and it went really well. I felt like I had to dump a WHOLE LOT of information onto the doctor for one day. However, she was kind, gentle, and understanding. We talked about what things had made things easier for Alyssa, what had made it a larger challenge, etc. She listened intently and gave me some good feedback as well. The interesting part was just reading the side label of Alyssa’s “hypoallergenic” formula she was able to tell that at minimum it has potato, soy, fish, sugar, and meat components. She did the blood tests today and we go back tomorrow for the results. How so quickly? She is the one that does them.Β  Honestly? She is so awesome. I was overwhelmed, still a bit jumbled from the flight and worried that I would forget something.

I’m excited to see what tomorrow brings. It will probably mean hand making food to go in Alyssa’s overnight feed but I would be more than willing to do that if it meant that her quality of life would be improved! Tonight I will go to bed hopeful for what tomorrow brings!!


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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, 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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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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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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is not your average Joe. We met with Alyssa’s GI doc for the first time today. The first time meeting with any specialist is nerve-wracking. Neil and I have discovered by this point that there is a corollary: The nicer and gentler the doctor… the more snooty and aggravating the staff. Sure did hold true today. Their office has two locations and when I made the appointment it was amidst being rescheduled, them juggling offices, etc. Long story short, I forgot which location and I did not want to walk into the wrong one and look like an idiot. I picked up the phone and called and by the time I hung up I was left wondering if something about my voice shouts “Hi, I am an idiot, please treat me as such!” She was short, condescending, and barking orders. I let it roll off my back and I did a google search for the doctor. The internet truly is an amazing tool. I mean back in “the day” you would have had to find someone who had experience with the doctor. No more! Found a review that gave his staff a 2 out of 4 and him a 4 out of 4. OK, I’ll still go. I packed up Alyssa, myself, and my ID and insurance card that I had been strictly told I would be turned away without.

Now, mind you, our appointment was at 11:10 but we were told to get there at 10:40 for paperwork. I have never understood that 30 minute window that all doctors make you come to fill out paperwork. Perhaps years of college note taking has sped me up, but I have yet to take longer than 15 even while juggling a kid. That being said, we were done and back in our chair by 10:55. Wait. Wait. WAIT. Finally at 12…yes 12… nearly an hour after the time of our appointment and 90 minutes after we arrived…. we go back. Weight, head circumference, etc. Each time that Alyssa has to have this head measurement done by someone new they doubt me when I tell them she is strong LOL! She almost wiggled off the table but her head did grow! 40.3 cm around! It has been at 40 for I think close to a year. That news was quite exciting for me because it is just a bit more proof of all the growing she is doing. The nurse came with us to the room and began asking questions about her history. At that point. I was a little upset. I have Alyssa’s entire history typed up. I offered to bring it and the lady said “No, we will get her info from her pediatrician.” Um. So, instead I sit there trying to pull for dates. Forget it. I told her I’d bring the list to our follow up appointment.

OK, finally. Doctor! YAY! Now, after all the drama of the day (which included losing the top to her bottle on the way from the car to the office and not being able to feed her while we waited LOL!) came the most wonderful time. This doctor … rocks! He listens, he factors, he establishes all the things that he feels WE want to work on as a family. Then, and only then, did he offer suggestions. He feels that due to her frequent choking that she may have a problem with her esophagus that is inhibiting her swallowing and keeping down thin liquids. She very very rarely spits up food unless you give her milk afterwards. He said that she may have silent reflux still and since she is such a happy kid it is easily overlooked. Also, he said that children that ‘microaspirate’ (suck small bits of fluid into their lungs) are far far more prone to pneumonia, and that could tie back to all her drama in the first year. We shall see!

He is running two tests. The first actually has me a bit geeked out. It is a swallowing X-ray. They give her a bit of thin liquid, a bit of thick, a puree, and a solid. Each of them are coated with a touch of barium and they watch her swallow on the X-ray to see what she does. Then, they will run an upper GI scan to make sure everything is how it should be. After all is said and done we will discuss a treatment plan. Best case, they may be able to medicate and stop the spitting up. Worst case, they can go in and put a little ‘pocket’ on the bottom of her esophagus that lets food go in but doesn’t let it come back out! Either way, it will be exciting to finally get some answers! The day started of a bit crazy but all in all he was a good doc and we found the missing part to the bottle on the way back to the car! HA!

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