The O'Neill Family Journal!

January 1, 2006 to March 31, 2006

January 4:

Well, Colin has had another two ‘dips’ today.  The first was this morning.  I usually take him from bed and have him sit with me at the computer and look at pictures so he can poop sitting up.  I did that this morning, put him down, did the diaper and then did other stuff.  When Nancy came she did his cough machine, but she didn’t do his mouth first.  I usually do that after I put him down, and I didn’t today.  He does usually not need it a lot in the morning, but he has lately since it’s been so dry.  Well, he must have had stuff in the back of his throat that plugged him, because he desatted to the high 60s.  I was upstairs.  Gene was downstairs so he helped with the suctioning, cough assist, etc.  I’ve now put the adapters for oxygen back on our cough assist and bipap.  We never usually need the O2 so I’ve long ago decided they were more a pain in the butt to have on there because they crack easily and then leak. 

Just now I was on the computer (5 feet away from Colin) and Nancy was making formula in the kitchen (10 feet away).  She went over to check him and he was at 90% and going down.  We normally have the alarm set at 90% for low sat.  So we suctioned and put on bipap and he was fine.  Lots of thick stuff blew out. 

I’ve recently cut him back 2 ounces of water in his formula and added an ounce of juice so he really isn’t getting much less water, but a tiny bit less.  Maybe that’s the culprit.  It’s been awfully, awfully dry here. 

Oh, and during TV school, he wanted ‘bap’ and then he had tons of gas and seemed like he needed to throw up. 

Nothing else is different.  So I’m not sure what’s up!  

January 11:

Gene is going to have his blood drawn on Saturday.  There are two little boys and a Vermont State cop in need of a bone marrow transplant.  Then he’ll be on the National Registry.  I’m not sure of the chances of him being a match for anyone but just wondering about “if” he is ever a match, what it would be like for him to give marrow.  He’s heard that he’d be sore for about 6 weeks, and when they take the marrow it’s unpleasant, but that’s all I’ve heard so far.

January 15:

Our buddy, Payton, passed away.  He was 5 and a half years old. 

To Debbie and Rob and all of Payton's Family and Friends: We wish you strength and peace. Payton has always been one of our little heroes, and he will continue to be. Love and hugs, Sue, Gene, Casey and Colin O'Neill

January 18:  

The boys had a "weather" day today.  It technically wasn't a snow day since it was mostly rain we're getting.  I guess the back roads will be a mess for a while.  Lots of high winds, too.  

Casey and Colin both played the darn old Sponge Bob, The Movie computer game today (separately).  Casey and I read a couple of chapters from his Bunny Bonanza book for his book report.  Colin played with his doggie play set and his haunted matchbox house with Nancy Lanza.  Casey listened to his idog and hung out with Nancy Hadd.  

January 18, 2006

From Allyson Weber:

"Here is our Memorial for Payton taken Monday evening.

I hate to write that this was our last picture taken of our beloved Timothy. He earned his wings slightly past noon today. He would have been 5 in April. I hope he and Payton are playing. I am very numb and tired. A lot of plans to make."

Timmy Weber was the first SMA child we had ever met, after MJ.  He has always been VERY special to me.  He and Colin were born only a week apart.  A large chunk of my heart is devoted to Timmy and it always will be.  We love you, Timmy! 

January 22:

Happy "Day Before" Birthday to Casey!  Casey turns 9-Years-Old tomorrow!  Today we celebrated Casey's birthday.  Of course, Aunt Chris was here and Grandma and Grandpa O'Neill came over in the afternoon.  We had some good munchies and we hung out and had a good time.  I went out in the morning and got Casey's birthday balloon bouquet.  It had a SpongeBob Mylar balloon and SpongeBob colored regular balloons.  I picked out a Mickey Mouse birthday balloon for Colin.  I think Colin really wanted a SpongeBob one!  I made a cake for Casey and cupcakes for school on Monday.  He enjoyed his gifts.  he got lots of books and DVDs which he really enjoys.  

 

January 30:

Casey got his new seating system for his power chair today!  Julie, Casey and I made it to New England Medical by 10AM.  Pam met us there.  It was a really cool process.  Of course, I don't remember what it's called, but it's basically foam that hardens after it's molded to the shape of the back of the person.  Does that make sense???  It's kind of like the foam that you can use for insulation.  It bubbles up, you can mold it, and then it hardens.  Nothing ever touches the body, as it's all contained in a huge plastic bag.  Once you get the position you want you can cut away the excess foam.  It took a couple of hours but I think it will be awesome for Casey.  He also got a new, more adjustable headrest.  He'll still need to use the head strap, but it cradles the base of his head/neck way better than his other one.  

After the appointment, Julie and I were starving, so we got some yummy sandwiches from the Bagel place.  Then we went to Big Lots and spent a lot of time shopping and looking around.  Casey seemed to enjoy his outing!

February 6:

Shannon was back today for school.  Colin was a little ornery and loud during circle time and got a time out.  He had his bipap on, so we took it off and he was a lot quieter and more attentive.  I think he likes how he sounds when he yells on bipap so he wasn't paying attention to school!

Barb came and we went and paid the water bill.  We went to Brooks for a bit and then to Zachary's for lunch.  Barb treated!  

Dave came to put the Dynaform harness on Colin's Easy S, but it didn't fit properly.  Looks like we're going to have to get one from the company instead of the one we wanted.  Now we have to wait LONGER to have Colin ride in the van with his new stroller.  

February 7:

Colin and I had a low-key day today.  Colin had a shower and got all spiffed up and I took some photos of him in his Easy S.  We played a little computer.  Tami came for Speech and did some oral motor stuff.  Casey got a GREEN today!  He's been getting some reds and yellows.  He was very happy to play computer with Aunt Chris tonight.  

WE MAY HAVE A SURPRISE TO TELL EVERYONE SOON!

February 8:

Today is Casey's Colonial Skit!  Terry and I are going over right now!

We had a good time watching the skits.  They sure put a lot of work into them.  I'm sure Mrs. Talley and the kids are all relieved it's over!  Casey did "yell" though the beginning of the skit, but not when it was his turn to say his lines, of course.  The kids pretty much pressed the DynaVox buttons for him as I think they were probably too nervous to wait for him to scan it himself.  They were all good and looked GREAT!  We also enjoyed the Colonial dance afterwards.  Terry and I took some photos but none are too great.  I'll put some up on our site soon.  We gave Terry a tour of the classroom and pointed out some things for her.  I think she was glad to see Casey in his element at school!

February 9:

Well, the day started off okay.  I didn't sleep very well but I felt pretty okay in the morning.  Later, I started feeling nauseas and I tried to eat something, but it didn't help!  I vomited once, a little bit.  My stomach felt awful and I spent a lot of time in and out of the bathroom, if you know what I  mean!  Poor Colin got a lot of TV!  I actually called Gene and asked him to come home.  He came home around 1o'clock or so, and I went right to bed and slept for a few hours.  I felt a lot better when I got up, but not 100%.  I had a little bit to eat and a lot to drink. We put the boys right to bed at 7PM.  (Oh, Nancy Hadd wasn't here for the evening since she went to school with Casey because Julie is on vacation.)  They fell asleep really quickly.  I had a big bowl of vanilla ice-cream (I know, I know, but it helps me no matter HOW I am feeling!) and watched Survivor and CSI in bed.  

February 10:

The phone rang right before 6:30 this morning.  Sue had a migraine and hadn't slept so she wasn't coming in to go to school with Casey.  I called the bus and Meagan right away.  Unfortunately, Colin saw me when I went in to talk to Terry and became WIDE awake.  I tried to go back to sleep, but no go.  Terry had brought Colin into the Yellow room to watch TV.  I gave him a quick shower and got him ready for school.  Then Casey woke up and I brought him into his room and got him ready and up in his chair. Then Shannon came for TV school.  Colin was pretty good.  They decorated a bag for their Valentine's cards.  Gene hung out with Casey.  Then Meagan came and she installed a switch activated reading program.  We showed Colin how to do it but he wasn't too impressed.  The beginning is basically just matching pictures.  But, it a way for him to practice scanning as well as show us what he knows.  She also installed cross scanner for us.  Casey had been really successful using it in school.  He can do point and click games/programs, and he's getting good at dragging and dropping, too.  We showed Colin a little bit of the cross scanner but the game we picked was weird and kind of blacked out where the cross scanning action was.  So, he bawled when we exited the games but I really wanted to give Casey a turn.  I set him up with his switch arcade games.  He did that for a while and then he wanted to show me how he can cross scan.  Of course,  couldn't get it to work right, so we got frustrated and I put in some living books for him instead.  I set up his DynaVox for him, too, and he told us the date and said hi to all of us, etc.  It was kind of funny because the first thing he said was, "Hi, nurses!" and of course there ARE NO nurses here so he was showing us his sense of humor!

February 11:

We brought the boys to see Curious George this morning.  An online Autism support group organized a special showing to include all special needs kids.  Colin has been loving the previews, so he was excited!   Casey kept telling us he didn't want to go, but I insisted that he go and told him he'd end up liking it.  Well, he sure got me!  He was good while we waited and he was good for the previews, but then he was "yelling" some (which really wasn't a problem because one of the conditions of the showing was a "tolerant audience", along with lower volume, and dim lights) but we tried to get him to be patient and respectful.  Well, finally, he just started bawling!  Nancy R took him out and tried to console him, but it didn't work too well.  He said he wanted to come back in, but he still cried. I went out with him and he calmed down some and finally watched the end of the movie.  I guess he just knew he didn't want to see it and he knew he normally gets to sleep in on Saturdays, so I guess he was pissed off at us.  Colin really had a good time!  Anyway, Casey is happy now listening to the latest Harry Potter book on CD.  Colin is snuggling with Daddy. 

February 14:

Happy Valentine's Day!

Click on the heart to visit our Valentine's Day web page that I created for everyone...

February 21:

Well, we’ve had a whirlwind of a day!  Started off fine.  We had our PT, Pam here, as well as our wheelchair guy and a representative from a company that distributes a bunch of stuff (I think he may be part of snug seat).  Anyway, they brought out a Gazelle stander to try for Colin.  While they were measuring him, I showed Pam how his new AFO didn’t’ fit well.  We had them casted a couple of months ago.  We loved the left one, but the right one didn’t seem right.  We sent back the right one and Pam asked for some changes.  Got it back, and I THINK I tried it on and it fit okay.  I can’t remember anymore.  Anyway, I didn’t think he needed to wear them because the range in his ankles is really good and he moves his feet around a lot and I don’t want to hinder that.  He was going to wear the AFOs for standing purposes.  Anyway, the other day I thought it felt like his range wasn’t good in one of his ankles, so I was freaking out.  I decided to have him start wearing the AFOs.  The left fit like a glove.  I could barely fit his foot into the right one and there was no way I could leave it on him.  I knew Pam was coming so I decided to show her then. 

So, she saw how they didn’t fit well.  We asked Colin if it was okay if he could just wear them while he was standing and he said “okay”.  We got him in the stander and I LIKE IT VERY MUCH!!  So much nicer than the Tumbleforms Tristander that he had before. 

"The Gazelle:

A Prone, Supine and Upright stander for children from 1 to 14 years of age. This 3-way stander is a great choice for children whose final standing position has not been determined. Available in three sizes, the Gazelle P/S comes standard with reversible footrests and knee supports that convert the unit from Prone to Upright to Supine.

Two innovations found only on the Gazelle P/S are the leg abduction feature and our lower leg adjustment brackets. The independent leg abduction system allows the femoral head to be angled towards the acetabulum (essential for children under age 7). The optional lower leg adjustment brackets allow the unit to be used for children with knee contractures up to 30°"

The best thing is that it comes with different headrest option!  There is one that is perfect to scoop and hold Colin’s head!!!

We got him looking good (will send photo later) but he was BAWLING!!  He was on bipap but his heart rate went up to the 190s, at one point, because he was so pissed, and/or maybe in pain.

So, Pam really looked and looked at his foot.  It’s about 2 times the size of the other foot and warm.  She also saw the decreased range of motion in the right one.  She wanted me to show DR. DiMichelle.  Long story, but I’m without a nurse, but Nancy Lanza came by to visit Colin, so he wouldn’t forget her, so she was able to help me throw Colin in the van and bring him over to the doc.  He had only been doing well baby checks and physicals, so no real sickies have been there since yesterday so we had to chance it (he’s going to Guatamala tomorrow to do a missionary thing for the next 3 weeks). 

So, Dr DiMichelle was concerned and wants BLOODWORK and X-rays.  He wants the bloodwork to rule out osteomyelitis, which is:

What is osteomyelitis?

Osteomyelitis is infection of the bone, usually by a pus-forming bacteria. All bacterial osteomyelitis starts as acute infection. If untreated or unsuccessfully treated after 6 weeks, by definition, it becomes chronic osteomyelitis.

What causes osteomyelitis?

Osteomyelitis is caused by bacteria, which enters the bone by injury (as by a sharp object or open fracture) or by the blood stream ( which is the more common mode of entry in children). In the discussion that follows, we will confine ourselves to infection from the blood stream - the hematogenous type.

The responsible bacteria differs in different age groups. In the neonate, the bacteria is usually Hemophilus influenzae. In older infants and children, it is often Staphylococcus aureus. The site of infection could be anywhere in the body, but most commonly in the metaphysis of long bones. The metaphysis of the long bone is that part of the body next to the growth area (or the epiphysis at either end of the long bone). So osteomyelitis tends to occur near the joints of the limbs.

What are the symptoms?

The child presents with acute pain near a major joint of the limb , associated with high fever. The typical patient looks sick. Blood tests often show elevated white blood cell count as well as high sedimentation rate and C-reactive protein. The high sedimentation rate and C-reactive protein indicates the body response to acute inflammation, and follow-up tests are good indicators of the progression of the disease and response to treatment. Blood culture is done to identify the responsible bacteria. Local aspiration of the site is also sometimes useful to identify the bacteria involved. X-rays are usually normal in the first 5 to 7days, until the periosteum (covering of the bone) is elevated by swelling or pus formation, when X-ray changes occur.

He hasn’t had a fever, but his heart rate has been up at times and he’s been grumpy at times, too. 

We will be going tomorrow for the blood draw and X-rays.  Gene will have to take work off to go with me.  **sigh**.  

Wish us good luck!

More O'Neill News:

Good, bad, bad...

Good news is that our nutritionist is happy (thus Dr. D., too) with Colin’s diet which includes 1 pack Vivonex and 1 pack Tolerex.  I have, in my hands, a script for Tolerex!!  Yay!!  Thank you to everyone who has sent me Tolerex in the past!!  I was hoping to help others out with the Tolerex, but for now, I just have a pack a day script. 

Bad news:

Casey has had blood coming out of his trach.  (Nurse Julie had to suction his trach at school once today-sometimes we don’t even do it once, but in the winters we do.  Otherwise we NEVER have to put a catheter down him because it comes up with saline and some in/exing.)  This is SO not normal for him.  He has had more pluggy stuff coming out, and it’s sometimes yellowy, and SOMEtimes a bit of dried brownish old blood, but today he’s had fresh blood.  It’s freaking me out!  I’m sure it’s just dryness (right???)  His humidifier wasn’t turned on from 4PM until 2AM last night (bad ooops).  We just did some saline nebs and I don’t hear anything in him so I’m not going to in/ex him until tonight. 

Bad news:

Julie noticed a couple of tiny, tiny sties on Casey lower, inner lid.  We haven’t had to deal with them in long time!  We have some erythromycin ointment that we’re supposed to start when we first see them, so he’s had his first application. 

(I’m decompressing with computer time…)

Casey had a treat the other night.  For his birthday, Julie wanted to “do something” with him.  We heard about a GospelFest in Burlington, so she got tickets for Casey, herself and Aunt Chris!  Casey loves gospel music!  When we put on the Black history channel, or The Sunday Gospel hour, and he sings away!  He loves when they dance and sway and sing!  (He’s not too crazy about the sermons…)  They only stayed for half the program since it was 3 hours long and there was school the next day.  They all had a good time and are already planning on going next year!  

February 22:

  Colin's tests went well today.  First we did the X-rays.  They were very nice and efficient.  The lab is in the new part of our hospital and it’s way easier to get to and the lay out is very well thought out.  Then we went to the lab, also in the new part of the hospital.  We told them what a tough stick he was, so they called down an IV nurse and put us in a room.  They warmed up his arms and feet.  She took a lot of time getting prepared but it was worth the wait!  She got him on one stick!

I called the docs office this afternoon, and of course, they weren’t aware that they should be looking for his info (our doc is away).  I got thru to a different docs office and the nurse was going to leave a note for the doc (he was coming in this evening) and of course, I haven’t heard yet.

I’ll pursue it in the morning.  His foot seems okay, still puffy and very little range.

February 23:

Leslie from Dr D's office had the info sent up to St. Alban's.  Dr. Holmes will be in later and read the results and call.  For now, we wait! 

Colin was restless early on in the night.  I came down and snuggled and had Terry give him Ibuprofen.  He slept well after that.  

Today is Casey's last day of school before break.  We decided not to send him tomorrow, for several different reasons.  He's bringing his power chair and DynaVox home today.  He's off now until March 8th!  

Aunt Chris goes to Florida on Saturday.  And last night was Terry's last night until mid-March!  It's going to be a busy 3 weeks!  Chris just called.  She didn't go to school.  She is nauseous and feels awful.  She's slept all morning.  I hope she's better when she boards the airplane at 6:30 Saturday morning!

11:30 AM

The doc from St. Alban's called.  Everything is fine!  The x-rays showed no abnormalities (aside from not bearing much weight).  They noted some swelling, but all is well with the bones.  The blood work was fine, too.  White blood cell count was normal, as well as the other tests—blank, blank protein (inflammation going on), and whatever the other ones were!  So, we are assuming it’s a soft tissue injury that will get better and better each day.  We’ve elevating it and I’ve been giving him Ibuprofen as needed.  Yay!

February 24:

I kept Casey home from school today.  It was the day before vacation and he doesn’t always do so well when things are “different” and today was going to be an odd day.  Nurse Sue was here for Colin so I got to concentrate on being with my first child!  We had a great day.  He went thru his whole DynaVox repertoire and we changed some buttons and added some, too.  Aunt Chris is sick, so I programmed a button so he could ask her if she was feeling better and held it up to the phone.  He played tons of his single switch games.  I am so proud of him!  He got to Level 4 of the Space Invaders game all by himself!  My Casey can do such amazing things just with the movement of his thumb!   We also got Pix Writer downloaded onto our computer so we played around with that.  It’s a program where Casey can scan thru and pick out words matched with pictures to create sentences.  You can add your own pictures and stuff like that.  He’s really good at it!  He also listened to some Cat Stevens with me.  We snuggled in bed and I read a couple of chapters of A Series of Unfortunate Events to him.  We also worked on his Power Point Presentation for his school project.  He already completed his Poem assignment and presented a Shel Sivlerstein poem to the class on his Step by Step yesterday.  We have his power chair here, but we didn’t get a chance to do that today—hopefully tomorrow!

Right now the boys are chillin’ and watching the new Sponge Bob episode.

March 13:

OKAY, my “guys” couldn’t get me Casey’s normal Shiley 5.5 trach this month.  They got us a Bivona in his same size.  It looks a bit different as it has this flex thingy on the outside.  We change him out in about a week. 

Anyone else tried these???

And, our pulmomologist wants us to have Casey’s trach “sized”.  We have an appointment with an ENT.  We went to this guy once about 7 years ago.  He really didn’t have anything to offer us so we’ve never gone back.  Anyone have a clue about how he may “measure” Casey’s trach?  We had a bronch done a year or so ago and he was clean as a whistle.  Casey has been low pressuring more and he’s been on the same vent settings and the same trach size for YEARS. 

I am going to call and ask about what they will be doing, but of course, I forgot to do that today.

 

February 26:

I think Colin’s foot is way better.  Yesterday I put on his AFOs and they fit pretty well and he tolerated them fine.  Today, I did the same, and it fit even better, so I’d say the swelling is just about gone.  We’ll never know what happened, but he seems to be better. 

Oh, and Casey’s sties are just about gone, too.   The erythromycin ointment did the trick! 

Today it was just the boys and Gene and I.  Nurse Sue got married yesterday so she took today off.  She and Carl have been together forever and just did the Justice of the Peace thing to finally make it legal (second marriage for both).  Gene and I had fun doing things with the boys and doing a little straightening and cleaning.  Grandma and Grandpa O’Neill came up for a little while.  Grandma had fun wheeling Colin around in his new stroller.  I finally put his battery and power strip on the kart.  We now have the H-belt so that he can be strapped in while in a vehicle.  NOW, to see if it fits in our van with Casey’s manual chair!  The size 2 Easy S is a pretty big “kart”!

Tomorrow, I have two nurses (the boys are on vacation so Casey will be home) so I am going to take advantage of it and GO OUT!!  I’ll have Nurses Sue and Julie here so the boys will be in very good hands.  I’m going to try to get my haircut for the first time since the beginning of August, YES, AUGUST.  Most places are closed on Mondays so we’ll see. 

I may peruse some toy stores and the Christmas Tree shop and who knows where else! 

 

March ?

Jessi and Kevin visited us this afternoon!  Jessi (20 years old, lives and goes to college in Ohio) and Kevin had some time off and Jessi wanted to show Kevin Vermont and to meet some of her family.  

March 5:

We received our SMA Chat Valentine's today.  They were late this year, for several reasons, but no one has seemed to mind!  It's always fun getting mail!  Lots of creative Valentine cards this year, and lots of pictures of the kids!  Check out the following link to see some of the kids with their loot!

http://www.smasupport.com/vday06.htm

March 13:

Okay, I should wait until I take a picture, but I love my messenger bag that Nurse Julie picked up when she was in NY this weekend.  It was a whole $3.  I was looking at some from Land’s End and LL Bean that were $60 plus!  I am going out today and will be on the lookout for “O” rings and some carabineers and then I’ll take a picture.  It will be perfect to hang from Colin's Easy S stroller!

March 18:

I’ve had 3 bad things happen to me today, so I think it’s safe to write about them.

This morning, Nurse Nancy L. is back caring for Colin.  She’s been out for about 7 weeks or so with an injury.  She knows Colin really well, so I trust her 90%.  Colin had been up early.  The night nurse and I got him up and changed and we had him in his pooping position, which is in our laps, sitting up.  He was ‘done’ so I had him on his mattress on the floor like normal.  When Nancy came she got right into everything like normal.  We decided to bring him in to Casey’s room (not where they sleep) to use his cough assist there.  She brought him in and was coughing him.  We didn’t’ have his pulse ox in there as it was just a quick cough session.  I was getting some stuff ready, just getting ready to go in and hover like usual, and I hear her yell for me.  She said, “he’s looking funny!”  He was pretty blue.  I’m yelling, “do something”!  I always yell that when I’m running around during critical times.  I grabbed the oxygen, started more suctioning, coughing, etc.  At first he was looking at me and trying to make noises but then his eyes started getting that far away look.  I told Nancy to run for Gene.  (He was still in bed).  He came down, quickly assessed and gave him a couple of big breaths with his mouth and I heard a noise that I can’t quite describe…something like a “pop”, shlop, I can’t quite say, but the plug moved and he made noises and his color started creeping back in.  I grabbed the cough assist stuff and did him again and a slimy plug came out.  Then, like nothing had happened at all, he started babbling and smiling.   Oh, at some point, someone got a pulse ox and probe, but by that time his sats were fine and his heart rate was okay, but a bit low.   He spent some time on bipap after that and has been fine since.

Later on, I went into our cupboard to get a bowl and SMASH—one of our juice glasses crashed onto the counter and floor!

Then, I put some tuna noodle casserole (from Grandma O) into the microwave.  I took it out and went to stir it and “POP”!  The sauce flew out and I had blobs of it all over my shirt.  If it had reached my face, it would have burned. 
So, if bad things really come in 3s, I think the rest of the day will be okay.

We’re having Grandma and Grandpa over for our St. Patty’s Day dinner tonight

March 22:

Well, we had a good visit with Dr. Hubbel.  We hadn’t seen him for 7 years so I guess it was time!  He didn’t even end up measuring Casey’s trach.  He said since we’ve been having good results with the Shiley to keep it as it is.  His assistant had spoken with Shiley and they ARE still making the trachs.  They have a lot of backorders but they ARE filling the orders.  He looked at his stoma but that’s about it!  He ended up giving me an extra trach!  We did talk about going up sizes but he said then you have to worry about the tissue and all that and he seems fine as he is.  That’s all we talked about relating to the trach!

I did ask him that since we were there, could he look at Casey’s ears.  Casey has always had chronic fluid and his hearing could never really be evaluated since he always has a flat tympanogram (sp).  His fluid isn’t infected but it’s consistently there.  He had one of his guys “take a picture” of his inside ear, which was cool.  Not much to see, but Casey thought it was neat.  (They had some high tech equipment there!).  Then they wanted him to do a hearing test in a booth where he had to answer when he heard a sound.  Of course, my Casey has NEVER liked to be in a testing situation….But, he did okay.  Sometimes he would blink his yes’es’ and sometimes he wouldn’t but she could tell by the way he reacted that he heard.  They do think it is impacting his hearing, though, to a point.  Dr. Hubbel suggested tubes.  He did say that maybe the muscles to the ear canals (I think) may not be working as well so they’re letting the fluid in.

Have any of your SMA kids had hearing/fluid issues??? Tubes?  I’m going to post on SMA Support and FSMA, also.  It really would be any easy procedure, with Casey, because of his trach/vent.  They just have to put him out for a bit.  

Now, I’ve always wondered about fluid with Colin.  He has chronic fluid, too, but not as extreme as Casey from what I remember our pediatrician saying.  I’ve always wondered if tubes would help with his speech.  Any ideas/thoughts??  Of course, tube wouldn’t be as easy with Colin, being he’s a bipap kid.  I explained it to Dr. Hubbel (he’s never met Colin) and he said it would be fine, that the RT would “bag” him while the procedure was being done.  I don’t know if I like that idea.  I’d like to think he’d be fine on bipap with a “bag” near by, as well as a crash cart!! 

Anyway, I’d be grateful to hear any thoughts/ideas/experiences.

March 25:  

Colin lost his first tooth!

March 31:

Hello everyone!

We will be taking part in a fundraising walk in Massachusetts to raise money for Families of Spinal Muscular Atrophy.

 FSMA is the largest international organization dedicated solely to:

  • Eradicating spinal muscular atrophy (SMA) by promoting and supporting research

  • Helping families cope with SMA through informational programs and support

  • Educating the public and professional community about SMA

Please visit the link below to sponsor our family!  It is VERY MUCH APPRECIATED!!!

 Thank you,

Sue, Gene, Casey and Colin

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