Friday, September 23, 2011

School, Solutions, Schedules, and Surgery

The girls are finishing their third week of first grade today, and I am happy to report that at this point I am feeling optimistic about what the rest of the year will bring. They are in the same class at a new school, with a new teacher and principal. Eden was able to keep the same aide (this is their fourth year together) and that has definitely helped to make the transition go much more smoothly because Ms. Jess already knows Eden really well and doesn't need any training on equipment/transfers, etc.

I am so pleased with the overall positive vibe that I get from the school. So far, they have been very open to working with us, as well as kind, and most importantly ***solution-focused***. They seem to embrace the whole concept of inclusion (rather than just tolerating it). I don't think I will have to put up a fight this year over things like "I don't want a stranger taking my kid to the bathroom," "I don't want my kids to leave school 15 minutes before the end of the day," "I don't want my daughter to ride the bus to the field trip by herself," or "I don't want Eden always sitting in the back or on the sidelines." So far, the staff seems thoughtful and proactive in working to include Eden in all of their activities. And, even better, their teacher seems very interested in getting to know...and teaching...ALL of her students.

That said, we are still making adjustments to the plan and working to get all of the right equipment and support in place. It looks like we finally have a desk that works with E's wheelchair. The desks with the storage cubby under them do not seem to work because they are too high and difficult for her to get things in and out of. We are trying to figure out a good system for storing her books and supplies where she can get to them independently. We are also looking for a new floor sitting solution. She has used a straddle-sitter the past 3 years and it worked well, but this year E is finding it really uncomfortable on her legs, as well as "embarrassing", and difficult to get in and out of. She has been sitting independently on the floor some of the time, but still prefers to w-sit which isn't good for her hips. We are hoping to get ahold of another Child Rite chair as this works well at home.

I talked to the team about Eden's progress with the walker this summer, and our hope that she will use it at school this year. We came up with some good ideas/times that she will practice walking. I took her walker in to gym yesterday, and she spent the first 5-10 minutes walking laps across the gym. She did SO WELL, and it was clear that she was showing off! Transporting the walker back and forth everyday will be a challenge, so if we could find one cheap or used it would be helpful. She is using a size 2 Kaye Products walker. If anyone happens to have one lying around that they are not using please let me know!!

One of my major goals for the year is to get assistive technology in place to help Eden with writing. She is able to write, can form all of her letters and draw simple pictures, but it certainly not easy for her. Her letters are large and can be difficult to read. Ideally we are hoping to get an iPad for the classroom for assignments that require writing. This is going to be a challenge - at least definitely a learning curve, for all involved, (namely ME) but Eden is very adept with technology and I foresee that she will eventually do all of her written work on an iPad or computer so I am willing to learn. I hope to get the ball rolling on this very soon (which means figuring out the red tape and what hoops I need to jump through asap).

The schedule has been a major adjustment. The girls went to pm preschool for 2 years, and last year were in pm kindergarten, so have gone to school from about 12-4 for the past 3 years. They didn't have to get up super early, and we were able to spend adequate time feeding them. Now...they have to get up at 7am to have time to get up, dressed, potty, teeth, hair, breakfast, shoes, potty again, and out the door by 8:15. The morning's are a hustle, but we're managing. Another, more pressing challenge, is the fact that they are in school all day now, and "eat" lunch at school... They have to stay in the lunch room for at least 10 minutes before they can be dismissed for recess... Anyone who knows anything about my kids and how they "eat" can only imagine how well this is going... Let's just suffice it to say that we still need to work on it.

Eden was scheduled to have her tonsils and adenoids removed (today actually), but we had to reschedule because she has been congested with a bit of a sore throat and minor cough this week (the usual back-to-school virus). Her sickness is pretty mild, but we really need her to be in top form going into the surgery. We've rescheduled for November 7th. I am super nervous and stressed about it. In a way, it would have been nice to get it over with so I wouldn't have to keep imagining terrible scenarios over and over in my head. Eden has very large tonsils (they almost touch each other). We contemplated having them taken out when she was 3, but at that point we weren't really sure whether they were contributing to her feeding difficulties and didn't want to put her through an unnecessary surgery without knowing it would help. Last winter the girls had strep a few times and it was especially difficult for Eden to recover. I am also convinced now that at least part of her difficulties with swallowing and snoring (especially when she is sick), restless sleep, and morning grogginess, are due to her large tonsils. So I do think it's best to get them out before we are full on into another cold/flu season, but I am still incredibly nervous and worried about how she will recover... I have heard some negative, terrible stories that I am having a hard time shaking... Will welcome any positive outcome tonsillectomy stories to help me get through the next month!

25 comments:

Laura said...

My twin sister and I had our tonsils and adenoids out the summer after second grade...before that we had strep all the time and were just sick a lot in general and it honestly really really helped us!!! I may have had strep once since then and same with my sister. Sure we had sore throats for a few days and wanted nothing more than to play outside with the other kids on our street while recovering but it was so worth it!

Shosh said...

my son had his tonsils and adenoids out when he was 3. he was seriously TOALLY FINE just a few hours later. i think it was harder for me than for him. i had mine out when i was 8. i remember it mostly just because i got to eat a lot of ice cream. im sure she'll be fine!

Christina said...

I had my tonsils out when I was 6, and what a godsend. I was sick sick sick all the time before then (I missed about 25% of first grade), and then after I got my tonsils out-- magic. I think I've had strep once since then. I was weak from having been so sick before I got them out, so my recovery was a little longer than usual, but it was really no big deal in the end.

Anonymous said...

My Son had his tonsils out when he was 4. He had kissing tonsils ( very large) he snored like you wouldn't believe, he had horrible breathe, he was really hard to wake up in the morning. All because of his tonsils and it also caused him to have a huge overbite. Got the tonsils out, no more snoring, over bite corrected it self. They said the huge tonsils were causing him to have sleep apnea and the position of his head in his sleep so he could breathe was causing the over bite! The surgery was fine, he had the same reaction I have to anesthesia and that is hysteria, so the recovery at the hospital did not go well, but once we got home, the main thing was to give him his pain meds every 4 hours. Make sure you get the meds flavored as liquid Tylenol three is not a good tasting medicine! Lots of juice, popsicles, ice cream etc and she will be fine. You will be amazed at how much better she will sleep, breathe, etc. The first night my son was so quiet in his sleep, I had to keep checking to make sure he was breathing because I was so used to him snoring so loud! Good luck to you!

Abby said...

I had mine out when I was 7. The only bad parts were that they didn't put me under until after separating me from my mom. I held my breath for as long as I could so that they couldn't put me to sleep. I just wanted my mommy. So ask if you can go in with her until they put her under. However, the doctors did put a scrub cap on my favorite stuffed dog and let me take him with me.

I also remember throwing up a lot after the surgery.

And my parents let me get new pjs for at the hospital. That was cool.
They will also check for loose teeth so she might have something for the tooth fairy!

I've had strep maybe once since then, and my asthma went away too. So it worked out, and I'm totally fine.

Allison said...

My cousin's 6 year old had her tonsils out in May. She had strep throat at least 6 times this year, prior to having them out. She did great with recovery, enjoying laying around watching movies and eating popsicles and ice cream during her recovery. Her pain was well controlled with meds, and I think after having strep so much, the sore throat from surgery was a breeze! Your little one will do great!! Peace to you, Allison

Emily Elizabeth said...

First off, I am glad that this school year and all of the changes have been good ones for you guys. Yay! Secondly, my tonsils, like Eden's, were huge and almost touching. I had my tonsils and adnoids removed when I was 6 and it was the best thing that happened that year. I had issues with reoccuring strep before and have maybe had it 4 times since (and its been 19 years). The recovery was annoying because not much feels good going down your throat; I ate a lot of ice cream and pudding. Hopefully Eden will not have too much trouble with this. I wish you both luck and a speedy recovery for Eden.

Kristin said...

My oldest has Autism. She also has an extreme fine motor delay which no one really knows where it came from. her fine motor skills are in the 2 to 3 year range and she's still trying to make straight line letters (I, E, H, L).

However, she is phenomenal on the iPad. The PTO actually bought a iPad for the special ed dept. We will occaisonally bring hers in if we have to but the school is really, really good about providing it for her.

She really (well all my girls) ejoys I write words. It works well on an iPod touch as well.

School sounds like it's going really well.

Anonymous said...

My nephew had his tonsels taken out. He is a little guy for his age. He is under weight and not even on the charts for a 5 year old. After he got his tonsels out he has started eating more and putting on weight. He now sleeps through the night which he did not do before.

feelingthesunfrombothsides said...

Another positive tonsillectomy story for you! My daughter had enormous tonsils (the surgeon actually made his med student come and look at them at our first appointment because he was so impressed with them....um, thanks!) and had them taken out last year, along with her adenoids.
She was six then, and I honestly wish we'd done it earlier as it just made such a positive difference for her. She stopped snoring immediately, her sleep apnea disappeared and she slept better (becoming less chronically tired and grumpy along the way!), she began eating better and went from being underweight to being a healthy weight and has shot up in height too. She's just been generally so much healthier.
She had a rough time immediately after her surgery, but pain meds helped a lot and even though she was sore during her recovery I don't think she was ever too uncomfortable. We stayed an extra night in hospital because of the post surgery blood loss she'd had, but even with that it was so worth it.

Neverland said...

Another "I wish we had done it sooner!" story of successful tonsil removal. My daughter had them out when she was 6, and it not only went smoothly [yes, she had a painful throat but pain killers worked very well to combat this], but my husband and I continuously remark now that we wish we had done it sooner!! The fear we felt and pain she felt is nothing in comparison to the health she now enjoys because of the removal!

Lily's Dad said...

My wife had her tonsils out last year and I read all the blogs, preparing for the worst. It wasn't bad at all. An adult friend who smokes had his tonsils out this summer -- also no problems. He was out and about the same day!

Everybody is different, but do not take the horror stories as typical. People who have easy tonsillectomies rarely feel the need to tell everyone about it. As long as the doctor is a good one and Eden's is healthy at the time, it will most likely go extremely well.

The Lucky Ones said...

I agree with all the previous posters about the benefits of tonsillectomy. My daughter slept so much better after getting tonsils and adenoids out -- and so much healthier!Her non-stop drooling took care of itself, too, which was an awesome surprise!

**Fair warning - recovery was awful in our house. My daughter was 4 and has autism, though, so maybe it won't be as bad for you. Days 3 and 4 were two of our longest days ever because Kate could not tolerate the pain meds, wouldn't eat, and was miserable. Even with that, though, it was such a good thing we did. All told, it was a horrible week with really great benefits afterwards. :-)

randybethmo said...

Our daughter, Morgan, had her tonsils out when she was 5, just before beginning Kindergarten. It was a nerve-wracking time for us as parents, but she came through like a champ.
The best advice we got for after surgery was to keep her throat moist, because it tends to dry out after surgery. She was really good about eating the otter pops until she was sleepy (like a nap or longer sleep time). She only refused once and it was smooth sailing from there...
After 24 hours or so, she was pretty much back to normal, bopping around the house. Way worth the effort.

Anonymous said...

My daughter had her tonsils and adenoids taken out when she was 3. She had a severe speech delay because of how large they were. After we had them removed, she was able to talk more clearly. I am so glad we did it! Recovery took some time (probably about 10 days before she was completely back to normal) but there were no complications. I would just suggest you give the pain meds as soon as you can! We did popcicles the first day... as many as she wanted. Good luck!

Rachel said...

I don't have a tonsil story, but I have a suggestion for Eden's desk. Can you ziptie a basket to the side of it so she can put her supplies there? I think I know the type of desk you're talking about, and I think they have a cross-bar on the side. You can tie the basket to the cross-bar and to the legs for stability.

Sounds like they're doing really well! I read your blog from beginning to end awhile back and it's amazing to see how far they've come!

Carrie said...

I am a special education teacher. I just wanted to comment on the writing part. I love iPads, I have one and I think it is great but... It is not great for typing. What we have done for some students who struggle with writing is to use net books. I typically do not go for the tiny ones, I look at the different keyboard sizes. You might want to have an OT evaluate what type of keyboard she would need. You would likely want something that has Microsoft word or equivalent. I just thought I would throw that out there.
As for the desk. I have done a variety of things, one is to attach a pouch of some sort to whatever chair the student using. Reaching things on the sides of desks is not always easy for some kids, but it works for some. I have even used a small rolling cart beside a desk. The plastic drawer bins from target on wheels work well for some students. The main problem I have had as of late are the new modern desks do not always have an area to put pencils. So they constantly roll off the desk. I have duck taped pencil cups onto desks or used that rubbery stuff that is sold to hold cell phones on the car dash.

Carrie said...

Oh I also forgot to say, please make sure that your surgeon is using the newest tonsillectomy procedure and not the traditional scalpel. The newest one uses a device that cuts with ions. The procedure is 2 years old but some doctors are still using a scalpel. This new procedure allows for a faster surgery, smaller cut, and cuts recovery time in half. Most kids are eating with in 24 hrs and are 100% in less then 2 weeks.

Christina said...

My then 9 year daughter had her tonsils out the day before Thanksgiving in 2009. She was eating turkey the next day. She had a little pain every so often much like a sore throat from strep. Mt son had his tonsils out last year when he was 6. He did great. He only had minor pain for a day maybe two. I will be looking into my 4 year old having his out soon because he has one side that almost touches even when he is not sick. I had my own tonsils out when I was 12.

Dream Mom said...

Billie, it's late so this will be short. I found a new website called, "Rehab Equipment Exchange" where you may be able to find a walker. It's like a Craigslist for therapy equipment. They had two listings on there for people who need equipment and for people who are selling equipment and a special section for pediatric equipment. Essentially, you contact the website owner, they send you the contact information for the person you need and then you correspond from there. I went there and found a buyer for a walker I was selling.

Here's the link.
http://www.rehabequipmentexchange.com/

One thing though, be sure to get the shipping quote separate. It can be quite expensive. For example, I sold a walker for $450 and the shipping charge was going to be $200 (the cost to box it was $80). Fortunately, I was able to ship it via my sister; they have a shipping discount at her company for employees who need to ship personal items and the employee pays out of their pocket for whatever they ship. We were able to reduce the shipping to $100 for the buyer so it helped.

Glad to hear things are going well with the girls. My how they have grown! Good luck with the surgery.

~RAch~ said...

My niece and nephew both had theirs out at the same time this summer. She is 6 and he is 3. They both did very well. Alayna was up and her normal self pretty much as soon as she woke up after the surgery. Fredrick was a little more laid back and the soreness bothered him a little more, but he's pretty sensitive anyway.

The only issue I had was both of their voices changed and they sounded like they'd been sucking on helium.. it lasted at least a month and honestly drove us all nuts LOL but it's all back to normal and they both sleep better at night. It was totally worth it.

Anonymous said...

My daughter had her tonsils out in Nov. She is 5 and did well. Day 5-8 were the worst but nothing too bad. The VERY WORST part was her BREATH no one told me that it would smell awful and I was scared thinking she had an infection but it is normal!

hallegracesmama said...

Jackson had his tonsils out last week. We had to postpone a month too because he started wheezing the day before

It hasn't been too bad. Day 3-4 were the worst but I just kept trying to get him to drink and take his meds. Today (day10) he finally seems to be back to his normal self- smiley and silly.

Gina said...

I've been reading for a long time, but I think this is the first comment I've ever left. Your girls are both beautiful.

My oldest had his tonsils and adenoids out this past spring at age 4.5. We finally went ahead with the surgery due to severe sleep apena (he stopping breathing between 11 - 16 times per hour!). We had it done at Children's Hospital (Los Angeles) which was a good experience as they were very good about working with children. They even let me hold his hand in the OR until he was completely anesthetized. I will be honest that the recovery was challenging. Because of his sleep apnea he spent the night in the hospital after the surgery which was a good thing as they could give him IV morphine which made him comfortable enough to drink and eat which was good. At home we ran into problems when he put up a screaming fight against taking the liquid codine (it tastes terrible) and then got into so much pain he wouldn't drink which landed him back in the hospital a week later with bleeding. Ack! We felt like parents of the year. So definitely talk to your doctor about effective pain relief and keep her well hydrated. I was also surprised that he quickly tired of ice cream and popsicles and began to literally beg for savory food. We found that overcooked mac and cheese was easy on his throat and very comforting to him.

But the surgery was SO worth it. His sleep apnea disappeared immediately. He hasn't had a significant cold or ear infection since (he'd had over a dozen ear infections). The dark circles under his eyes have gone away and he sleeps probably two hours less per night (11 - 12 hours or so as opposed to 13 - 14) and has much more energy. His appetite is better and he seems to have a better sense of taste and smell. Despite all the pain, even he says that he is glad he had it done.

I think you'll be really happy with the results.

Jo said...

Hi Billie It has been so long since I checked the blog and it is great to see you all happy and well. On the tonsils, I used to suffer terribly as a child - this is what happens when your parents are medical professionals, you get NO serious medical attention, haha! Eventually, I got them out for my 21st birthday gift :) 2 tonsils and 4 wisdom teeth out all at the same time and I am so glad! I rarely get my kids' colds, but my husband always gets sick.

And on the iPad, my daughter is three and is better on this thing than I am...

Hugs from Scotland, Jo xx