Updates
Here are the most recent updates from Hannah's treatments.
Thursday, Dec. 20
WE'RE DONE!!!! Whoohoo!
It's a good thing, too, because I think Hannah's sick again. She has a really runny nose, and she's been coughing and whining all day. Her pediatrician wanted to see her tomorrow morning to check on her wheezing again, so at least we already have an appointment. Poor girl...she was miserable today. It was a rough trip home, but we made it and she fell asleep right away.
The hyperbaric center had Christmas presents for all the kids. Everyone got backpacks (Hannah's is pink and purple, and Noah's is blue and red) and picked a gift from under the tree. Noah got some blocks and Hannah got some art stuff. That was really nice of them!
Anyway, our house is a disaster zone. All the junk from emptying out my car along with my mess from being in the middle of making sandbags and fixing up the toy/therapy room is totally cluttering up the house. Less than two weeks ago it was spotless. It's hard to keep it clean when we're so busy, and even though we're done in Fitchburg, our schedule's not going to be any easier, at least not for awhile.
Wednesday, Dec. 19
One more day left of Hannah's treatments!!!!! I can't believe it's almost over. Tomorrow we don't have to be there until 11am, but we won't be done until about 6pm, either. I'm so glad we get to take our time getting ready in the morning! It's going to be hard not going up to Fitchburg everyday and seeing everyone there. The people at the center have been like family. It's been a truly amazing experience...one that I'll never forget.
Monday, Dec. 17
Good news...Hannah's ears are cleared up! She's still wheezing, though, so now we have to give her some steroids and continue the breathing treatments with the nebulizer. We have to go back on Friday for a re-check. After her appointment we headed up to Fitchburg for a 1/2 day of treatments.
It was a bit complicated to get her therapies and chamber treatments rescheduled for Tuesday, Wednesday and Thursday of this week, but the center was able to squeeze us in. We were supposed to be done last week, so they had other people in our place, but we worked around that. It's only a few days, so it's alright that it's not a perfect schedule. The only thing I'm not looking forward to is having to be there at 7:45am tomorrow morning. Yuck.
The therapy equipment we ordered for her is starting to come in. We've gotten 3 of the 5 shipments, so far, and I went to the fabric store and Menards to get the stuff to make sandbags. I started making them yesterday, but I'm not done yet. I decided to use muslin to hold the sand, and then I got some really thin vinyl to put over that so it'll be spit-up proof, and I got some colorful, fun cotton fabric for a cover to make it comfortable and easy to clean. Hopefully my plan works. I'm excited that we'll be able to start her home-therapy program right after we finish at the center!
Unfortunately we're not going to have enough money for a home-chamber, though. It's disappointing, but there's not really much we can do about it now short of having another big fundraiser, and we're not ready to do that at this point.
Wednesday, Dec. 12
Although it sucks that the kids are sick, in a way it was good that we had to postpone Hannah's treatment because the weather this week has been pretty treacherous. The ice and snow has made travel difficult. I know because Josh still had to go to work in Madison yesterday and it took him FOREVER to get home. Plus, all the area schools were closed yesterday due to the weather. So, at least we got to stay home in our warm and cozy house.
I spent a lot of time yesterday going through catalogs and pricing therapy equipment for Hannah's new therapy room. I finally got everything ordered. Hopefully it'll get here before the end of next week so we'll have it as soon as we're done in Fitchburg. The only thing I have left to do is to make some sandbags. I have to take a trip up to Janesville to my parents' house today or tomorrow to look through my mom's fabric supply. I used to have my own supply, but it was in the dresser upstairs that had mice in it, so we threw it all away, including the dresser.
Since we’re home, I decided to give the kids "music time" after lunch. Monday I took out the kids' percussion accessory instruments (tambourine, hand drum, maracas, etc.) and they had a lot of fun playing them. Yesterday I turned on my keyboard and rolled them up to it. They had such a blast. I took some video, but the lighting is bad. I don't know why, it was really bright in the room...probably just had the camera set wrong again.
Here's Noah playing:
Here's Hannah playing:
Here's their first duet ever:
I'm not going to be pressuring them into being concert pianists or anything. I just want them to explore music and have fun.
I also succeeded in capturing Hannah's giggle on video. How, you ask? Well, Hannah has a thing for guys, and she absolutely loves big hand gestures, so we watched Dr. Phil this afternoon...and it worked! Even though it was a serious topic, Hannah kept cracking up at Dr. Phil when it was just him on the screen and he was talking with his hands. The lighting is bad on the first video...sorry. The first video is her doing her old kind-of laugh, which sounds more like squealing, but the second is full-out giggling and is absolutely adorable. Remember, we waited almost 2 years to hear her laugh like that! So, here they are, but first...I'll throw in a picture of her playing with her birthday presents, too. (Yeah, that's a Hannah Montana doll. She loves her play laptop because she can push the buttons and it talks to her, plus she looks like her mommy and daddy then. Ha ha.)
Hannah squealing at Dr. Phil's show:
Hannah giggling at Dr. Phil's show:
Another video I got was with Hannah holding her right arm in a good position all by herself. She tends to twist her arms all the way inward, so when I saw her holding it this way, I wanted to capture it.
Sunday, Dec. 9
Today we had a birthday party for Hannah and Noah! It was fun, even though both kids are sick . They were up all night Friday coughing and such, so we decided to take them to the doctor on Saturday, and sure enough, Hannah has a double ear infection, and Noah has a sinus infection. What a major bummer. Poor kiddos. Unfortunately, we won't be able to finish our last 3 days of Hannah's treatments until she recovers. I tell ya...it doesn't seem like we'll ever be done with the 8 weeks worth of treatments.
Friday, Dec. 7
Prepare yourself for a picture/video overload. Ha ha. Here we go...
Random...
Kids waiting patiently:
Hannah looks so different with her hair down. We usually put it in a ponytail to make therapy easier.
Kids tuckered out after a long day:
Noah's Birthday...
When he gets excited, he goes, "ooh, ooh, ooh," and flaps his arms (Hannah thinks he's nutso):
Enjoying his cupcake:
Time to open his present from mom & dad (a little people dump truck):
Hannah's treatment...
Here's audio from a car ride to Fitchburg. Just thought I'd share the lovely screaming I had to endure for our trips lately. It's an hour and 10 minute drive in good weather, and about an hour and 45 minutes with bad weather. She was okay today, thank goodness. The past couple days have been horrible, though. Sorry the video doesn't have images...I was driving.
Hannah in the chamber...
Today she said "moo" 4 times in the chamber! We've been working really hard trying to get her to make the "m" sound when she's not mad, and she's finally doing it!:
Hannah in OT/PT...
Tummy-time on a wedge...look at her hold her head up! ( the arm in the back is her therapist holding her butt down since she tends to put it up in the air):
Standing with leg immobilizers on:
Tall kneeling (she did it by herself for a little while):
Sitting on sandbags:
Hannah's come so far since we've started her treatment. We used to have to support her head with our hand all the time because it was so floppy. She's starting to roll a little by herself, too. It takes her awhile to figure out how to get over her shoulder and knee, and she gets a bit upset, but she works through it and has rolled completely over from back to belly and back all in a row (facilitated with a wedge) all by herself a couple of times. Hannah used to get her head stuck to the right a lot, and although it still happens from time to time, she's able to fix it fairly quickly by herself without getting upset. What a change! The newspaper called and wanted to know if we started the treatment and how it was going. They said they're interested in doing a follow-up story. That's cool.
Here's a video of Hannah eating Mac & Cheese the day she ate 17 bites of food. She's still doing alright with the eating, but hasn't had that good of a day since then.
Tuesday, Dec. 4
It took me 2 hours to get home from Fitchburg tonight because of the snowstorm...ick. I should probably get up early tomorrow so I can leave earlier and get there on time.
Hannah's had some rough car rides to and from Madison this past week. I'm not sure why, but she's had times where she'd scream the whole way there and back. That made it tough to drive, and a lot more tiring than usual. Anyway, in therapy she held her head up while laying on her tummy for 1 min. 45 seconds yesterday. She also took 17 bites of warm baby food and swallowed the majority of it!!!!! She's definitely getting stronger, and that's exciting! We have increased our last 8 afternoon sessions in the chamber to 90 minutes at pressure, which means it's a total of 1 hr. 45 minutes in the chamber...it's LONG. (We're still doing the 1hr. 15 min. sessions in the morning too.) We're hoping to see some significant changes from being in there longer. Only 6 days left! I'll be glad to be done and get back to "normal," but in a way, I'll miss going up there and having people to talk to everyday.
Anyway...time for sleep. Hopefully I'll have those pictures and videos soon!
Tuesday, Nov. 27
Happy Birthday to Hannah!!!
That's right...Hannah turned 2 years old today! I took some pictures with my new camera that I got as an early Christmas present (along with my digital frame...whoohoo), but they didn't turn out very well 'cause I didn't have the settings right. Oh well...you get the point. I'll try to make them better next time.
Hannah has been sick with a cold lately:
PICTURES FROM TODAY, Hannah's Birthday!
Today at the Hyperbaric Center:
When we got home (Noah was starving!):
After dinner:
Hannah with her presents:
It's so hard to believe she's two already! I remember those first couple years, and I'm so relieved that she's a lot easier to take care of now, and that she's actually happy, too. Just the fact that she smiles and laughs means the world to me, and I'll never take it for granted. She's a precious little girl, and I thank God everyday for giving her to us.
She had a good day today...no major spitting-up, and no big crying episodes. I gave her a taste of the frosting from the cupcakes we brought and she liked it. She also took 3 bites of warm applesauce in speech therapy! She spit out the first bite, but swallowed the second two. How exciting! I think it's time to start pushing her a little more in swallowing. Repetition is what's going to help her, and a few bites every couple days isn't going to cut it, so we need to work with her more at home. It's just been so hard because by the time we get home, it's dinner-time, and then soon after, it's bedtime. Guess we'll have to figure something out.
Noah gave Hannah a great Birthday gift today...he slept through her OT/PT session! She liked that because then mommy was there watching her and not paying attention to him.
Thursday, Nov. 22
Happy Thanksgiving!
I forgot to post one picture from this past Tuesday. We were in Fitchburg and Hannah was freaking out as soon as we entered the big speech room, so we took her to the small speech room that her other speech lady uses to see if it'd calm her down at all. She stopped crying thank goodness, and to keep her calm, her speech therapist said Hannah could be in charge during the session. So of course, she had to wear the blue gloves (latex-free) that they use when they're working with her mouth. I thought it was cute, so I snapped a picture. She still wouldn't smile, but she wore the gloves and was good for the whole session!
Wednesday, Nov. 21
It's snowing! Darn...I was hoping we'd get through Hannah's treatments before it started snowing. At least we don't have to go up tomorrow (Happy Thanksgiving!) or Friday. On Friday both kids have their yearly check-ups with the pediatrician. They're getting the flu shot too. I'm sure they're going to love me for that.
Anyway, Hannah's treatment is going well. She's talking a little more in speech and her tongue and cheeks are getting stronger, so that's a good sign. Her new record for sitting on her own in OT/PT is 3 minutes!!! Although, that is with sand bags holding her feet down, but still, it's a big deal that she's able to balance her trunk and head for that long. Her therapists have been trying to make it harder for her by not propping her forward and taking the bags off her feet, which is why she hasn't really gotten past 3 minutes since last Friday. It's good for her to be challenged, though. They're working on sit-ups and standing with her, too.
I found out that the therapists will be writing a home-program for us to use when we are done. I looked online for some tumbleform equipment (wedges, bolsters, etc), and it is outrageously expensive. Thankfully when we were doing Hannah's fundraiser a lady contacted us and told us she had a bunch of equipment she used with her daughter, who had cerebral palsy and passed away, so she was willing to give it to us. Turns out she had a wedge that came with a few extra pieces, and we'll be able to use it to do most of Hannah's positioning. That's nice. There are still a couple things we're going to have to rig up somehow, or break down and purchase. The sand bags have so many different uses and they are really handy, so I think I'm going to try to make some for her at-home therapy. It can't be that tricky, but if anyone has any tips...I'd be happy to hear them! I heard you have to bake the sand first. Anything else I need to know?
I think Noah has a cold. He's been pretty snotty, although today was better than yesterday. This week has been a pretty messy week as far as the kids go. We've had many poopy diaper accidents that have ruined some of their clothes, and Hannah's been really pukey. Yuck...
I haven't really posted many pictures lately, so I thought I'd post some from the past couple weeks.
Here are some from the hospital visit for Hannah's 2nd SPECT scan....still no results :
Daddy comforting Hannah, Hannah trying to sit up in the bed, and Noah patiently waiting...
Noah's tray on his stroller lifts up and flips over so it's easy to fasten his seat belt. Well, he's figured out how it works and is constantly playing with it. Sometimes I just take it off so I don't have to worry about him slicing his head open or something.
Friday, Nov. 16
Hannah sat for 3 minutes by herself today!!!!!
Friday, Nov. 9
We're half-way done with Hannah's treatments! She did awesome in her therapy today. The amount of time she was able to sit by herself improved to a whopping 1 minute and 20 seconds! She looks like such a big girl when she sits all by herself like that. I've also noticed that she's been bending her legs more often, too. I'm really excited about her progress with physical therapy.
Her speech therapy, on the other hand is not going as well as I had hoped. Swallowing is our top priority right now, and it's really frustrating that she has 2 speech therapists and neither specializes in swallowing. One of the therapists had the owner of the therapy company, who is a swallow specialist, sit in during part of one of Hannah's sessions to help figure out what we should be doing to get Hannah to swallow better. It was good having her there and I wish she could work with Hannah, but unfortunately she doesn't treat kids because she does all the administrative things instead.
Hannah's speech therapists have been working on vocalizations, too, which isn't really working because Hannah talks up a storm all the time, except when she's in speech. She rarely says anything during speech, and it seems like a waste of time right now. I'm not saying that speaking isn't an issue for Hannah, because it is, but right now we need to get her to swallow so we can hopefully get her eating and have her GI system work better.
Thursday, Nov. 8
The goal was for Hannah to sit by herself for 15 seconds today...guess what? She did it for 15 seconds and we were so happy, but then she did it again for 26 seconds!!!!! She also kneeled for 20 seconds by herself! How exciting is that? Especially since she seemed a bit crabby today.
Oh yeah, and Noah is starting to cruise a little!
Wedneday, Nov. 7
Today the kids were so well behaved even though things didn't exactly turn out as planned. We went to the rehab clinic for our appts. at 12:30pm and 1pm. Well, the first lady we were supposed to see was running late, so we actually got called back for our 1pm appt. first, and that was at 1:20pm. When we finished with that we went out to wait for the lady we were supposed to see at 12:30pm and it turned out there was a scheduling mishap and she didn't even know she was supposed to see us today. We got things straightened out but ended up having to wait until 3:15pm before seeing her so she could measure Hannah for the stander. We didn't get done until 4pm, and that was too late for us to go back to Fitchburg and get in the chamber the 2nd time. So now we'll probably have to drive up either Friday morning or Monday morning for 1 chamber treatment. That way we'll have the full 40 treatments in before the brain scan, which is scheduled for Monday afternoon because the anesthesiologist wasn't available on Friday. Fun Fun...
Anyway, they've been putting Hannah in the cage a lot in her OT/PT sessions. She wears this weightlifting type belt, which is way too big for her stomach, so they have to use a bunch of cushions to make it fit. Then they hook up 4 bungee cords to the belt to help stabilize Hannah so she can feel what it's like to be free-sitting or free-kneeling or whatever. They use the bungees to pull her to one side to make her try to correct herself by using the opposite muscles to pull herself back up. It's pretty cool to watch. Here are a couple pictures of her in action. The first is in sitting position with a bunch of sandbags around her to help stabilize her legs in the ring-sit position and for her hands to lean on. The second is in crawling position with arm immobilizers that are supposed to help her keep her arms straight without hyper-extending them. Her therapists actually had her rocking back and forth on her hands and knees like Noah used to do before he started crawling.
On the way home on Monday we could see the rain/sleet/snow falling from the sky in the distance. It was pretty cool, especially since we didn't have to drive through any of it. By the way...it's not easy taking a picture while you're driving. I would not recommend it. The only reason I did was because it was a flat spot in the road and there weren't any other cars around.
The trees are losing their leaves. I think we missed the best time for leave changes because of Hannah being sick, but we had some days and some spots that were absolutely gorgeous.
Hannah's therapists want to start working more with her standing, which is why we went to the rehab clinic today. We were supposed to get her casted for ankle-feet orthotics. The guy we saw said that he's not sure they'll work for Hannah's feet because they're so tight and dorsi-flexed (up and to the outside). So, now we have to go see a pediatric orthopedic surgeon to figure out what to do with Hannah's feet. The guy we saw today said that he thought he knew what was wrong with her feet, but I can't remember what it's called. Something about the leg bone sliding over the ankle bone...I'm not sure. Her appointment with the orthopedic surgeon is Dec. 13...the day after we finish her HBOT. Hannah's physical therapist had mentioned that they might want to do botox to loosen up the muscle and then put a cast on it to keep it stretched out. The guy we saw today didn't think that'd help if it's this bone problem, though. I guess we'll find out soon enough.
Tuesday, Nov. 6
I forgot to mention something very exciting that happened this weekend with Hannah. Sunday afternoon we had brunch with Josh’s family and Hannah was watching Josh’s uncle very intently. She became really excited and had this huge grin on her face. Then she stiffened up and started giggling…like real giggles, not just her normal high pitched laughing sound. It was so adorable…like music to my ears. I started tearing up. I’ve waited 23 months to hear her giggle. It was truly priceless. I hope she finds lots of things funny enough to giggle about in the future!
Sunday, Nov. 4
This week we only have to go to Fitchburg Monday-Thursday, but Friday we have to go to Milwaukee. Hannah will finish her first series of 40 treatments on Thursday, so I'm trying to get her Brain scan scheduled at UW Children's Hospital (Milwaukee) for Friday. I'm so anxious to see what the new scan looks like. It'll be interesting. On Wednesday in between Hannah's therapy sessions, we have an appointment at the rehab center to start the process of getting her AFO's (ankle-foot orthotics), which are like braces for her ankles to help her feet while she's standing, and a stander, which will help her practice standing on her own.
Thursday, Nov. 1
Remember that picture I posted of Hannah with her on her tummy while her therapist's hand held her head up because she didn't have the strength to hold it up on her own? Well...yesterday she was in the same position on her tummy and held her own head up for a minute and 30 seconds before she got tired and dropped it down!!! Today wasn't the best day in therapy because we tried to use a different video. Apparently she only likes to work hard for Hannah Montana's show. Silly girl.
The Hyperbaric center had these funky glasses they tried on the kids. Josh bought them both new Elmo outfits.
Monday, Oct. 29
Today was super-exciting...Hannah sat by herself for 10 whole seconds!
Sunday, Oct. 28
Hannah's therapy and chamber sessions are going so much better. We've done 11 days worth so far, and we have 29 to go, which means we should be done in the middle of December. Hannah's sitting up so much straighter in her car seat.
Here are some pictures from inside the chamber. I took them on my phone, so they're not the best quality, but hopefully you get the idea.
This is the inside of the chamber. The door is shut and you can see one of the two little portholes.
Hannah's not too happy when she first gets into the chamber. She doesn't really like the oxygen hood too much. I think her hair gets caught and pulled in it sometimes.
Hannah's still not happy as the pressure increases. She usually fusses until we get to the maximum pressure (1.5 ATA) and our ears adjust. I have to rub her ears to help them pop since she's not great at swallowing and taking care of it herself.
Once we get to pressure, she's happy and doesn't mind the hood so bad, as long as she's in a comfortable position.
She even plays in the middle of the HBOT sessions. I've found that the hour and 15 minutes goes by much faster when we have something to do while we're in the chamber.
A little more than five minutes before we're done in the chamber, the techs start decreasing the pressure and there's this rush of cool air that's quite refreshing after being pretty warm for an hour. Hannah always likes that, probably because she knows we're almost done.
Like I said, she's doing a lot better in the chamber now. Thursday and Friday she even fell asleep for our afternoon sessions. That was nice and relaxing. I've been bringing her bumbo chair in (yes I know there's a recall) and I prop her back and head up with pillows and blankets and it works really well because it seems more comfortable for both of us. Anyway, that's what it's like to be in a hyperbaric oxygen chamber.
We're in the chamber two and a half hours a day, all the while Noah's out flirting with all the ladies who work there. They just adore him, and he has the best time. I'm glad because then I don't feel guilty about leaving him. Sometimes the person watching him brings him in by the chamber and we wave to each other through the porthole. Hannah gets really excited when then happens. She has, however, been getting a little jealous when she's doing therapy and I'm taking care of Noah. We're in the same room about 5 feet away from her and he usually takes a nap then, so it's not too much of a problem, but every-so-often she sees me holding him or playing with him and she pulls out the famous pouty lip.
Well, I guess it's time to get the bags packed for another exciting day! Hope everyone had a nice weekend!
Tuesday, Oct. 16
Bad news. Hannah's ear infection isn't any better, and she's still wheezing...poor girl. So, the doctor put her on another antibiotic and had us get a nebulizer. We go back for another re-check next Monday, so we have another week without treatment. Major bummer! I'm frustrated because she was starting to make some progress, and I'm anxious to get going again.
Friday, Oct. 12
It turns out Noah doesn't have an ear infection, it's just a cold. Hannah seems to be doing a little better with the coughing, but she's still kind-of snotty and pukey. At least we used the time off treatment wisely. Yesterday I cleaned and got caught up with the laundry, and today I took my car in for maintenance (Josh was able to come home early and work from home so he could watch the kids).
Hannah was all smiles today despite her being sick. It's hard to believe she's 22 ½ months already, and Noah’s 10 months!
Wednesday, Oct. 10
Hannah was up last night a lot with really bad coughing attacks. She woke up at midnight and again at 5:20am this morning. We decided rather than try to put her back to bed for a half hour, we'd get her up. Josh gave her a bath, and I gave her some medicine, but she's still got a horrible runny nose and cough. So, we thought it’d be best to take her in to her pediatrician today, and see what he says. I think she has an ear infection. She's got 2 teeth coming in, and I'm sure that's not helping. I hate to miss a day of her treatment, but she wouldn't accomplish much being this miserable, and I can't even imagine how awful it'd be going into the chamber with her like this. Hopefully today's the worst of it and we can resume treatment tomorrow.
Anyway, last week Hannah's therapists thought she'd work better if I left during her session, but she was actually worse and still fell asleep toward the end. I thought maybe if we did her therapy before the chamber she wouldn't be so tired, so Monday we tried that. Well, she didn't fall asleep during her session, but she still cried the whole time, plus her feeding schedule was all messed up and it just didn't work well with the therapy/chamber/speech schedules.
So...yesterday we went back to the original schedule, and Hannah was extra antsy and whiny in the chamber the first time. It was a rough dive. She screamed for the first 10 minutes of her therapy, and then her therapists had a different idea. Instead of having me leave during therapy, they wanted to try having me be more involved in her therapy and hold her while they gave her the massage. Voila! She stopped crying and started watching her DVD. (We recorded some of her favorite Disney channel shows to bribe her to work.) I sat by her the whole time, held her hands, and talked to her, and she was good and watched her shows. She got a tad cranky for the last 15 minutes or so since she was tired and they put her on her stomach over a wedge. She wasn't too happy about that. Overall, though, it was a great therapy session! Yay!
We met her T/R/F speech lady yesterday too, and she was awesome. I really like her and so did Hannah. This gal was younger (probably in her 20's), had a lot of spunk, and was very kid-friendly. I'm glad Hannah gets to have her as well as the older lady on M/W. Plus, the younger gal has openings earlier in the day which means we can get done at 3:45pm instead of 5pm on those days. Anyway, the last chamber dive went alright, too. Hannah fell asleep for about 20 minutes, but then I shifted a tiny bit to look at the clock through the porthole and she woke up. Whoops.
Noah has been so good through all this. The people at the center just adore him 'cause he's such a charmer. Many people have said he brightens their day. They call him smiles. The girl that watches him for us is always so excited to see him, and he really enjoys being with her too.
Hannah has an ear infection. She looks awful. The doc prescribed some antibiotics, some steroids, and something for her wheezing. He said that should help clear it up the fastest, which is good because we can't resume treatment until she's better. We have to go back for a re-check on Monday morning, and if she's good, we'll head right up to Madison after that. It really stinks we have to temporarily put it on hold, but we don't want it to hurt her if she's already got ear trouble. Please pray for Hannah to have a speedy recovery!
Bad news...Noah's sick too. It looks like we'll be making another trip to the doctor's office tomorrow. UGH. I had a feeling we should've just had him checked out today too, but he wasn't showing any signs of being sick this morning. What a pain. I hope they get better soon because it's so hard to see them so miserable.
Saturday, Oct. 6
Well, week 1 of Hannah's therapy is over! It was completely exhausting, but we made it through it. Here are the kids at the end of this crazy week.
At least they're still smiling, right? This week has been quite frustrating for me because Hannah's had such a hard time with the therapy sessions. She has therapy after being in the chamber, and the chamber seems to make her tired. So, she starts a 3 hour therapy session tired and upset because she doesn't know these people yet. She's constantly crying, which makes her even more tired, and then she ends up falling asleep after a couple hours. I'm not saying it's her fault because I know it's not. It's just frustrating because it doesn't seem like she's getting the most out of it since she's so crabby and tired. We have seen changes, though. Her head control is getting better and she doesn't seem as floppy anymore.
Anyway, I decided to ask them to try a new approach. So Monday, we're going to arrive at 8am and go straight to therapy for 2.5 hours (may have to cut back to 2 depending on if she can handle it or not). Then the chamber times will be 10:30am & 3:45pm. We didn't get to talk to the speech people, but we're hoping someone can fit her in around 2 or 2:30pm, that way Hannah won't be tired from the chamber when she starts therapy or speech, and we'll have from 11:15pm-2ish for a nap. We'll see if that helps.
Yesterday was particularly tough for me. Both Hannah and Noah were constantly spitting up and trying their best to resist napping, so they were pretty crabby. The tech let us go in the chamber the 2nd time early so we could leave earlier, which was good, but I was practically pulling my hair out the whole time we were in it. Hannah was so antsy and I had the hardest time getting her comfortable. She kept fighting me for positioning, which made me super-hot 'cause it's already really warm in there. She kept whining, and then she spit up bad enough that I had to take her oxygen hood off to wipe her off. That was 10 minutes into our 1hour & 15minutes and I just about got on the walkie talkie to tell him to cut our time short, but I took a deep breath and we stuck it out for our full time. Boy was it rough, though. I was so glad when we felt the cool gush of air the last five minutes and saw him open the door. It was like....FREEDOM! ha ha. I hope it gets easier next week.
So, to close, I thought it'd be appropriate to post some pictures from Hannah. One is from her therapy session and one at home after a long day. My poor little tired Hannah-bear.
Thursday, Oct. 4
Noah was in a better mood today, but Hannah's was kind-of up and down. This morning in the chamber she was so good. She didn't cry at all. I thought we were going to have a great day. Unfortunately, she got really upset in her OT/PT session, though. She actually fell asleep an hour before she was supposed to be done, but we decided to let her sleep instead of pushing her too hard. The afternoon chamber time wasn't so great, either, but she did awesome in speech. I had to take Noah in with us, and he was being noisy, so I took him out, and Hannah didn't even get upset.
Hannah's OT/PT people and I talked and we're going to try having me and Noah leave tomorrow. She'll probably get really upset to start out, but we're hoping she'll calm down and work better without me there because she's usually looking for me to rescue her. Most of the time I don't, and then she gets mad. So, we'll see how it goes without me there at all.
Wednesday, Oct. 3
I’m really glad today is over because it was absolutely awful. Hannah’s teeth were bothering her; one of them even started to bleed. She was miserable and whined/cried almost all day. Noah was cranky, too, because he only napped for 45 minutes in the morning and not again until the ride home in the evening.
There’s only an hour and a half between the therapy and the 2nd chamber dive to change diapers, feed both kids, and let them nap. It didn’t work very well today because someone kept bugging us. Hannah did sleep for a half-hour during our lunchtime and she fell asleep for an hour in the chamber the 2nd time, too, but she was still tuckered out during speech. I put her to bed at 7:15pm tonight and Noah went down at 7:40pm, so hopefully tomorrow will go better. I remembered to pack some Tylenol, too.
Anyway, guess everyday can’t be a good day. They say the 4th and 5th days are the worst because the kids are so tired.
Tuesday, Oct. 2
I don't have much time to write because 5am rolls around way too fast. We started Hannah's HBOT & intensive therapy yesterday. My mom stayed home and took care of Noah, which was a HUGE help!
Hannah does surprisingly well in the chamber. She cries for the first 15 minutes when the pressure is increasing and her ears are adjusting, but she's generally okay after that. An hour and 15 minutes is a long time to spend cooped up in a chamber with 2 portholes, and the hood thing makes it a bit tricky to maneuver/hold her. She gets a little cranky from time to time from being restless, but I try to keep her occupied and play with her. The second time we went in the chamber yesterday I took a portable DVD player in with us, and she actually fell asleep after the pressure changed, but we had to wake her up to take her out, and she was mad about that.
The therapy people mainly did assessments yesterday, so that was easy, but today they dug in and started working her. It was kind-of funny because she fell asleep 3 different times while she was on her tummy. She's never really liked tummy time...okay, actually she despises it, but she did alright today. One time she was on her tummy for 15 minutes without even crying! The highlight of her therapy session was when the therapists had her sitting cross-legged on the floor and holding her sides and feet. Hannah did so well with her head control. I was amazed at how long she was able to work on that (it was around 40 minutes), and at how long she held her head up without wobbling or flopping forward. Maybe the oxygen's working or maybe it was just a good day. I've never seen her last anywhere near that long, though. It'll be interesting to see what happens tomorrow.
I better get to sleep.
Please keep her in your prayers!
Friday, Sept. 28
Okay, so we went to Milwaukee again today. Josh stayed up to give Hannah her last formula feeding at midnight, and I got up at 4:30am to give her some water because that's the last time she could have clear fluids before the procedure. I tried to go back to sleep, but was unsuccessful, so I got ready to go. It took awhile for Josh to get up and then Hannah puked all over her hair, which meant she needed another bath. Needless to say, we were running very late. We were supposed to be there at 7:30am, but we didn't get there until 9am. It didn't matter though because their predicted time for us was 12:30pm, and they didn't actually get her in until 1pm.
Anyway, they got the IV in on the first try, the procedure went perfectly, and there were no problems with the anesthesia. YAY! I'm so relieved that it's over with, and to make things even better, they already gave us a copy of the images on a CD ROM, so we don't have to mess with transferring records and everything. Josh took some pictures of the day on his cell phone.
Here's Hannah after she came out of the recovery room, still a bit sleepy:
She was so little in that big hospital bed:
She got an award for bravery. When I first saw it, I smiled. She has been through a lot of junk in her life, and she's not even 2 yet! I've always been taught, "That which doesn't kill you makes you stronger." Guess we have one strong girl on our hands!
We left the hospital at 3:45pm, but we didn't get home until 6:30pm. Just in time for Wheel of Fortune...whew!
Noah was very well behaved today. He had so much fun playing in the playroom while we waited for them to do the scan. It's so nice that he's such a good little boy.
Thursday, Sept.27
We got to Milwaukee for Hannah's brain scan on time today. Everything was moving along as planned. They got the IV in on the 2nd try and injected the dye. Then the nurse came in and asked me some questions about Hannah. Well, that's when our problem began.
Hannah had a small rattling sound when she breathed, something that's completely normal for her, but the nurse was concerned and after talking with the radiologist, she decided she couldn't use the sedation medication with Hannah. Apparently it relaxes the muscles and she was concerned about Hannah having breathing problems because there would be no way to reverse the medication's effect if there was a problem. So, I was freaking out thinking she was going to say they couldn't do it at all, but then she said that they would be able to do it, but that she would need an anesthesiologist to handle the sedation.
After checking, of course, there was no one available today. I insisted that this be done no later than tomorrow because I was not changing the HBOT stuff I just set up. So they put us on their add-on list for tomorrow, which means that we have to be there at 7:45am, but they can't tell us when we'll get called in. It could take an hour, it could take all day. Boy oh boy.
It wouldn't have been so frustrating had I not called them ahead of time to make sure they could absolutely do this because of her age and needing to be sedated and her size and everything. I even had Hannah's neurology nurse call to double check and be sure they could do it. Heck, the doctor's orders even said that Hannah would need to be asleep during the procedure. You'd think if there was a possibility the nurse sedation wouldn't be safe that they'd have a back-up plan. I don't know...I don't understand why we always have these kinds-of problems. It's so annoying, and costly, too. So yeah, I'm ticked beyond belief, but at least they can do it, and that it will *crossing my fingers* be done in time.
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