Disability Awareness Clip

I saw this video on another blog this afternoon. I loved it, absolutely loved it. How do you feel about the video?

Milestone Alert!!!

JACK PEED ON THE POTTY!!!!!!!!!!

So we're very proud at the moment!!!! We're taking potty training very, very slow. He started to hide while pooping and when he's done he'll tell me. He knows what his penis is (pee pee) and he knows that's where pee comes from. He seemed a little shy when I made a big deal over peeing in the potty so the next time I just said "hey great job -- wanna flush?" and he did. He loves flushing -- but if he doesn't pee, he doesn't get to flush. We're at the basic stages here and any advice would be appreciated.

We're using a very basic potty ring with a splash guard right now. I think I may look into something more sturdy further down the road.

Pharmacy Concerns

Please read the email we sent to our pharmacy last night...

Picked up oral Baclofen for my 4 year old son tonight. When inspecting it a home, I noticed that there were large vi sable chunks of undissolved "material". I called the store to report this issue and they instructed me to bring the medication back and that they would mix up a another dosage. I returned to the store and was given another bottle, however there were still chunks of undissolved material. Pharmacist told me that the new generic pill form since store switched from Old Pharmacy to New Pharmacy does not "mix as well." I asked what would happen if one of the chunks ended up in my son's dosage and if it could be an overdose, and her reply was that it could. I asked if it was ok to give the dosage to my son if I was sure that none of the chunks was in the dosage, and her reply was yes, but I detected uncertainty. She then proceeded to tell me that the chunks were "probably" the filler used to make the pills. She could not provide any other direction and apologized to me. I am concerned and upset a couple of things here, but mostly that the pharmacist could not provide any more instruction and more importantly was willing to give me the medication knowing that there was potential risk for my son. Unfortunately we do not have any remaining baclofen - which is our fault - but, we have never had any issues getting this medication quickly and properly up until now. We are forced to skip this dosage and scramble to find another pharmacy in the morning that can mix baclofen compound completely. I have images of the chunks in the bottle should you be interested.




This morning I am taking both kiddos to another pharmacy hoping they can remake the Baclofen. This is unacceptable! We often hear horror stories of pharmacy errors and it's one of those things that's always in the back of my mind. With compounds it could be so easy to make a mistake...which could be very serious if not fatal. We have worked with our current pharmacy for 4 years and as much as I really like the pharmacists I will be taking our prescriptions elsewhere from now on.

So please, always inspect your medication. If something looks off call right away, don't assume things have changed or they switched brands, etc. If it's not the same look, color, smell, or taste call and ask why! It's better to be safe in this kind of situation.

I'll let you know how we make out -- the place opens at 9 am and I plan on being there then!

Those Magic Moments...

Morgan's check up went well! She's just over 12 lbs and in the 50th percentile for weight -- and that's not adjusting her age. She's catching up very well. We were given the okay to switch her to regular baby formula. I chose Nestle Good Start Supreme -- after reading about their proteins being broken down more than other formulas. It's much less expensive than Nutramigen -- although of course if she'll get whatever she needs if she can't tolerate anything else!

We had one great night this week where she slept through the night at the right time! WOO HOO -- progress. Last night was a very difficult night though. She was up all night...unhappy and finally at 3:30 am went to sleep. She ate quite a bit -- nearly every two hours, but I am not sure if she was eating because she was hungry or because it was comforting her.

Jack is doing quite well. His behavior's been pretty top notch and he's been trying a lot of new foods and requesting them too!! He also had his first shower in the bathtub! He LOVED it!

He's growing up so much. He's using so many new words -- and if he doesn't have a word for something he uses that great imagination of his and chooses something from what he can say...for example he loves it when I trim his nails...he lays back and hands over his digits one by one. Last time I told him he had a hang-nail and that's why it hurt a little. So several days later he kept saying "Hanger, I wan hanger." So I assumed he meant a clothes hanger...we went into the closet and when I presented a hanger he started crying. I picked him up and asked him to show me what he meant and he directed me towards the bathroom cabinet....he opened the drawer picked up the nail clippers and said "HANGER!!" I had to scratch my head until I remembered our conversation about the hang-nail. I love to see his mind and memory at work. Now that he's using more words I see he knows and remembers so much...so, so, so much more than we ever guessed. So while the rest of the world needs some interpretation I LOVE our conversations. I wish each and every one of you could experience it for yourself! Although sometimes it can be frustrating trying to decipher what he's talking about the magic that happens when we're both on the same page is truly amazing! And that magic happens more and more every day!

PS -- CHEL...I was hoping to be invited to read your blog :) angwilhelm@gmail.com

Morgan -- A Night Owl...

It's okay, because she's cute -- but we are seriously lacking sleep at our house! Morgan has really ended up getting her days and nights confused. I have tried many different things to try and remedy this -- but it seems that she's sticking to her guns on this one. She has this super fussy time between 10:00 pm and 12:00 am and then she eats and will usually go to sleep sometime between 2:00 am and 3:00 am. She will sleep 5-6 hours, wake to eat and take a few naps during the day. Last night was actually the best night we've had in a long time. We avoided the fussy time by the skin of our teeth by entertaining her and trying to tire her out. I don't know if this is the "right" approach, but sanity comes first. She went to sleep around 1:30 am without having to cry for 2 hours before hand! I realize all of this is normal infant development at this age. Jack used to fuss every night from 7 pm to 9 pm for a few weeks...then he'd sleep "through the night" from about 11 pm to 6 am...so our time is coming -- I just hope sooner than later.

Morgan's reflux is well controlled now -- YAY! She's taking Prilosec and 2 tsp of rice cereal in her bottles. She's still on Nutramigen formula (the pricey stuff) but since it's working so well I am reluctant to make any changes at this point in time.



She's a happy baby (this picture is for Steph -- Miss Morgan in Tony's high chair!!) She loves to play on the floor...she even loves tummy time! She's growing and changing every day right before our eyes. She has her 4 month check up soon -- and I am sure Dr. C. will be pleased!

I have so many other things to blog about...but it always sounds better in my head, and when I get to the computer it just doesn't come out! I think of things before sleeping most nights and by the time I remember any of it, my thoughts are random and disconnected! So I will continue to read the blogs of my dear friends and stare in awe over their ability to write so well!

Walker...

Jack has been doing so much walking with his walker at school. There, he uses a Reverse Kaye He can go 70+ feet at a time! He uses it on the playground and in the classroom. At home he uses the Crocodile Walker. It's a little harder to turn than the Kaye, but it's other features are important too...I am glad he is learning to walk with both.

I took a small video clip of Jack about an hour ago pulling to stand at his walker. I wish I could express how HUGE of a milestone he's accomplished. We've been working on this for over a year and he does it now with speed and without help. When we first started teaching him how to get up into the walker you could tell he really didn't have the motor planning sequence at all...now it's just a matter of becoming more confident.

(Waiting on the video to upload 25% finished...lol)

I have been thinking a lot lately about the day Jack takes his first independent step. I wonder when it will happen...where he'll be...where I'll be (This boy had BETTER walk for the first time in front of ME! lol) It feels so far away even though he's so far from where he was last year at this time. It will be one sweet day, that's for sure.

(Okay, video is 32% complete...)

FINALLY, here's THE MOMENT you've been waiting for!

Tag, you're it!

I've been tagged by Heesun to tell 8 random things about myself...can I think of 8?

1. When I was 10 or 11 I read almost a book a day the entire summer break. I read books like Baby Island, Mandy, The Forgotten Door, and the entire series of Girl Talk books...all 45 of them.

2. In high school I had the lead role in the Musical "Oklahoma!" I have fond memories of being involved in drama, music, choir, and show choir. I also twirled flags in color guard...how I'd love to get my hands on a flag and do some drop spins or double time, perhaps a toss or two?

3. My middle name is Starr.

4. I dropped out of college at Millersville University -- only to work 3 jobs, realize I wanted to go back to school and graduated from our local community college.

5. I HATE, HATE, HATE black olives.

6. I find writing about myself is hard.

7. I used to work as an administrative assistant in an office for a group of engineers. My last day of work was the day I delivered Jack.

8. I am NOT a morning person! It takes lots of coffee to get me going every morning. Right now I am obsessed with Dunkin Donuts coffee...mmmm!

I tag Lisa, and Rural Felicity -- you're it!

I've been a BAD blogger...

One word -- Reflux..poor Morgan can't be put down much lately at all. The Zantac isn't working one bit, so the dr. called in an rx for Prilosec which we're going to pick up as soon as Jack gets on the bus.

Thanks everyone for your comments and suggestions on my previous reflux post. The rice cereal is helping with the not spitting up, but I can hear it rise in her throat and can tell it's burning. Her voice is getting raspy again -- I hope the Prilosec helps more than the Zantac did.

He started riding the bus again last week. It's a lift van and he rides in his wheelchair. I had a lot of anxiety at first, but now it's getting more routine. He has a nurse that meets us here, rides the bus to and from school with him and is at the house about an hour after school. You would think that would be a relief and helpful, but it's actually stressing me out. Since Jack doesn't require full time care it's hard to get a steady nurse, so I am always training or orienting a new person. I feel kind of like I don't know what they're supposed to be doing. They sit with him during snack time, work on flash cards and some can do range of motion and stretching with him. The nurse we have today took care of someone with Quadriplegia for several years so she'll be able to stretch Jack with no problems.

Jack's behavior has improved (knock on wood PLEASE) since we tweaked his dose a little more after our neuro appointment last week. We were also given Clonazepam for the uncontrollable, huge meltdowns. Hopefully we won't have to use it but we have it just in case.

We are going on a mini vacation to visit my friend Kris and her family this coming weekend!!!!!!!!! I am soooo looking forward to it. We'll take tons of pics I am sure! We're staying in a hotel with an indoor pool, so even if the weather doesn't cooperate we can always hang out at the pool.

I haven't been getting any sleep...I am up holding Morgan most of the night...I've been able to watch a few good movies and shows. I really like the real estate shows, especially the ones where they buy up an old beat up house and flip it and sell it for a major profit!!

Anyway, Jack's really fussy now because he hasn't napped, Morgan's crying and the bus will be here in less than an hour.

I hope everyone is doing well! I am sorry I haven't been around much.

Broons!!

I was in Morgan's room and I hear Jack start saying "Oh, oh, I wan, I wan" (want) "Help, helpa" then he starts whining..."Broons, Broons" it took me a moment to process what he could want and I remembered we got a balloon at the grocery store a few days ago. I thought maybe it was out of his reach or stuck somewhere. When I walked into the room this is what I saw!




We have a DVR cable box and sometimes when I am rocking Morgan I watch my soap -- usually end up getting 10 mintues here and there -- but I still know what's going on in Pine Valley. Before I got up, I happened to pause right on this part of an underwear commercial (Fruit of the Loom)...I cracked up and grabbed my camera. TOO FUNNY!!!!

Reflux Lives Here...Again...Sigh

Morgan had her two month check up yesterday. She's 10.5 lbs!!! OMG -- chunky monkey!!!!! lol and I believe she said it was in the 50th % age NOT ADJUSTED!!

She's developmentally on target, again age NOT ADJUSTED!!

Unfortunately, she suspects Morgan has reflux. I admit, I've seen the signs but didn't really know for sure even though Jack had pretty severe reflux for the first 10 months and was on Reglan and Zantac. Anyway, she gave us an rx for Zantac and told us to thicken her feeds with rice cereal 1 tsp per 2 oz of formula. We never did this with Jack -- does anyone know of a good cereal feeding bottle? I really want to get a new bottle vs. cutting the nipples we have because I don't like that one could be different than the other plus, I am afraid a piece would break off...any advice on cereal feeding through a bottle would be appreciated! I remember reading that putting the cereal flakes in a food processor helps to make it smoother -- any truth to that? Makes sense to me.

I filled her rx last night and she had her second dose this morning. I hope it kicks in soon so she can get some relief. I did not start the cereal yet -- since it was late when I got home with the supplies and didn't want to make such a major change at night. I purchased the avent bottle with a fast flow nipple -- just one incase she hates it, don't want to go buying a bunch until I know which one works.

I swear at one point we had Jack at the ped every week for a zantac weight check! Our ped is new (as of 2007 our old one retired) and she calls Morgan "our baby" and is very attached to her! She said she joked with the ladies in the office and said she wanted Morgan to come for weekly check ups so they could all ooh and ahh over her! lol -- I declined with a smile, now it looks like we may be in more frequently anyway.

Thanks again and I will keep you all posted!

Things...

Jack's behavior has improved drastically. I don't know yet if we're back to baseline -- but it's so much better than it had been. Our house is more peaceful and Jack is laughing more than crying and screaming. I never want to go through that again.

Jack had a post-op check up with the ENT. Everything looks great and he only wants to check back with Jack in 6 months!

Morgan visited the Audiologist today because she had failed her newborn hearing screening in the NICU. They told us not to worry and to have her hearing checked in a month or two. NICU babies tend to block out sounds due to being in such a noisy environment -- and therefore fail their first and sometimes second screenings. She passed her screening with flying colors! We knew her hearing was good because she surely reacts to sound. It was just nice to have the final say today. She is now free and clear of all specialists -- just her regular ped. When filling out the forms at the hospital today -- it felt strange not to write paragraphs! I am so used to Jack's loooong, loooong list.

Both kids are keeping me super busy. My to-do list never ends. I am so far behind that the days and weeks just run together. I am enjoying every minute of it though!

Jack starts school again on July 9th. I am waiting on the nursing agency to find coverage. I am sick and tired of this -- but nothing can be done right now. I have arranged for a lift bus to transport Jack and his wheelchair to and from school. The nurse will ride the bus with him as well. Please keep your fingers crossed that our nursing scheduler can get it together and find steady coverage for Jack so he does not miss school.

Well, gotta run! Morgan's hungry!!

More...

He's cute, that's for sure...here, he's at it again!

(YouTube video will be available shortly!!)



Also, I was looking at some old pictures and found one of Jack that really reminds me of Morgan! They are about the same (adjusted for prematurity) age...

Jack Aug 2003


Morgan June 2007

Jack, What Did Mommy Say?

Jack has a few naughty things he does when I'm not looking...

Most recently he's taken to pulling all of Morgan's diapers out of the diaper stacker on the pack and play...I find them in his toy box, under the sofa -- all over!

He KNOWS he's not supposed to do this...but can't resist. Here's his latest confession:




He's too cute and sometimes I have to leave the room so I can giggle...

South Beach Diet Broccoli Salad Recipe

Perfect for phases 1, 2 and 3!

Salad:
6-8 cups fresh broccoli, cut into small florets
1/2 small red onion, diced
1/2 cup shelled unsalted sunflower seeds
1 cup shredded low fat cheddar cheese

Dressing:
1 cup mayo (we used 1/2 reduced fat and 1/2 regular)
3 tbs red wine vinegar
5 packages of Splenda
salt/pepper to taste

Mix dressing ingredients in bowl with a wire whisk.

Mix all ingredients, chill one hour and enjoy.

We made this recipe yesterday and it is fabulous! Very satisfying and was best when chilled. You'll never guess it's low fat or low carb!

Finally, Some Computer Time!

Hi everyone! I am so sorry for my lack of postings -- I have had so many "I have to remember to blog this" moments that I can't remember and don't know where to begin!

Jason and I are still tired, but doing well on just a few hours' sleep...I seem to remember a similar feeling when Jack first came home from the NICU. Morgan is growing, growing, growing -- seriously she's got to be 10 lbs or more by now. She has her two month check up the first week of July. It's always exciting to see how much they've grown! She eats and sleeps well and is very pleased to be held. She must get that from her big brother -- although sadly Jack hardly lets anyone hold him anymore unless he's really sleepy!

Jason and I started the South Beach Diet last week. We did it before in 2004 and had a lot of success with it. I feel better when we eat better (duh, lol). Pregnancy tends to add a few pounds (really?? lol). My goal is to drop 30 lbs and I am 6/30 so far!! I haven't missed or craved anything too much (yet). We're getting creative and have had a lot of great dinners this week. Preparation is so important so I prep as much food as I can at once and then pick and choose when it comes time to make meals or snacks. Shopping is fun too -- it sort of gets me out of my usual rut. All this being said next week I'll probably be blogging about dreaming of white bread, and ice cream! Hee hee!

This has been a very rough two weeks with Jack's behavioral side effects from the Tegretol dosing schedule change. Trying, hard, nearly unbearable at times...we know it's not our Jack Riley when he's acting out and it breaks our hearts. I finally broke down and called the neuro yesterday. We are going from 5, 5, and 5 to 4, 4, and 6 ml's so he's not so loaded up on the med during the day. I am keeping my fingers crossed. If this doesn't work we can do 3.5, 3.5, and 7. Please keep Jack in your thoughts. We need to get seizure control with no unbearable side effects. I know it will happen it will just take some time.

I know there's a lot more I wanted to write about but I can't think of it at the moment! To all of my blogging friends I have been reading and I really have been thinking of you all!!

I've added some new pictures to the June album! Take care and have a great weekend!

Morgan and Jack...

Morgan's wearing a new dress from Aunt Trib!



Just look at how he's grown!

Neurology Appointmment...

I took Jack to see his neurologist today. Have I mentioned how much I truly appreciate our neuro? The appointment was very informative -- I learn something new every time we go. Jack's Tegretol level was good, but he's having some side effects from the schedule change. His behavior has declined and he's acting out with anger and tears. I hate seeing him this way. Dr. N. said we should see improvement with his behavior soon. If not, we are to call him right away.

We talked and talked and talked and talked...he's a great listener and really good at answering our questions.

***TO BE CONTINUED***

Morgan's wailing and Jack just woke up from his nap. Well, at least I got 5 minutes!!

***LET'S TRY AGAIN***

It's 4:00 am and Jack is awake. Morgan just sleepily downed a bottle and I brewed my first pot of coffee. Today it's Dunkin Donuts brand...MMMM!!

Our plan for Jack's seizure management is to see if the new Tegretol schedule works. If his behavior improves and he has no breakthrough seizures we won't change anything. If he continues to have these undesired side effects or if he has another seizure we will try a different med. He mentioned Trileptal or Keppra.

He related several different patient scenarios from his years practicing medicine. He explained how he works with parents and patients to find a plan that suits them. I am comfortable with this plan. I think it's so important to have a doctor who listens and truly listens. Dr. N. does exactly this. We talked about Jack's seizures and where they are coming from. His EEG shows the activity is coming from his Temporal Lobe -- which is consistent with his brain injury. The type of seizures Jack has are called Complex Partial seizures...two of which generalized into Tonic Clonic seizures. So he's been having the same type of seizure which is important to know because it means the focus hasn't changed and we're not dealing with anything new or different. He explained vomiting before a seizure goes hand and hand with the Temporal Lobe of the brain. Although vomiting is yucky, it's sort of a red flag or warning and if Jack vomits we can be on the lookout for a seizure.

I mentioned how I was not treated kindly by one of his nurses and the expression on his face told me this wasn't the first time he's heard this! He said this much as well. He asked what I would like to do about it. I told him nothing. I am not looking to get anyone fired by filing any sort of official complaint -- I just wanted to make sure he was aware of her behavior. So hopefully he will talk to her. I'd be happy with that.

At one point Dr. N. joked and asked if I had ever considered medical school. It was a resounding NO WAY...lol. I've been asked by other medical professionals if I was a nurse (no), a physician (no), a school teacher (no)...I am "just a mom" and happy to be "just" that.

ENT Surgery Today

The surgery went well. It was done locally at an outpatient surgery center. It went really fast without complications. Jack was quite upset when he woke from anesthesia, but I don't blame him one bit.

The Dr. said Jack's adenoids were HUGE and made a wide gesture with his hands and they were blocking his eustachian tubes -- this is what we had suspected. There was also a lot of fluid built up behind his eardrum.







What are adenoids?
The adenoids are small pads of tissue found behind the back of the nose above the throat. They cannot be seen by looking in the mouth. Adenoids can become very large and block the eustachian tubes (the tubes from the middle ears to the back of the nose) and cause ear infections. Large adenoids can also block the nasal airway causing your child to breathe through his mouth and snore at night. Adenoids can become infected and carry germs (bacteria).

Why should the adenoids be removed?
Blocked-up nose: Very large adenoids can block the nasal passages. This causes snoring and keeps your child from being able to breathe through his nose. Severe blocking may lead to more serious problems (such as apnea and heart problems). Removing the adenoids lets the child breathe normally through the nose.

Recurring ear infections: Very large adenoids can block the eustachian tubes and lead to ear infections or the failure of ear infections to clear. If a child has surgery to place PE (pressure-equalizing) tubes in the eardrums at the same time the adenoids are taken out, it can help prevent recurring ear infections.

We had a rough night last night! Jack and I went to bed around 9:30 pm (Daddy had "first shift" with Morgan). Jack woke up at 11:30 pm, and 12:30 am and decided it was time to get up
FOR THE DAY at 1:00 am. My poor head hurt so badly -- I needed SLEEP! My "shift" with Morgan usually starts around 2:00 am...I tried without success to get Jack to go back to sleep, so I sent Jason to bed and had both kiddos running me ragged all night long. Jack couldn't have anything to eat 6 hours before surgery so I was happy that he requested breakfast at 2:00 am. What a night. I did dishes and made bottles just to stay awake. Morgan went to sleep after her feedings, but Jack and I were up all night and went straight to surgery this morning. Jason has to work until 10:00 pm this evening at a trade show. Timing is just not on our side this week. Jack napped for a little after we got home, and is now pretty much back to normal -- just a little less spunk than usual.

I have just under 4 hours till I can sleep!!!! YAY!

Another Seizure...

Jack had another seizure last night. It was a lot like the last one with the altered personality and repetative/robot like behaviors. He vomited right before and several times after...we gave him diastat about 5 minutes into the siezure. He did not have a fever, he didn't sleep much at all last night, but is out like a light now...probably due to the diastat.

I had Jason fax the following to his neurologist this morning:

Last night Jack had another seizure. He was restless over night, but no other seizures. Please call after you've had the chance to review this note.

9:00 pm -- vomit
9:20 pm -- lip smacking, swallowing hard, repeating "all done" -- he's not there, he won't smile and is staring a lot.
9:25 pm -- diastat (5 mg) given

Observations during this seizure: He could answer questions but very robot-like. No smile or personality. I took a small digital video of me interacting with Jack and asking him questions. No jerking or body movements. He had a slight tremor in his left hand when I asked him to hold the pen. (He does not use his right hand functionally so it's hard to say if it was one sided). His heart was racing.

Diastat seemed to take effect after about 10 minutes,

9:40 pm -- lying on couch with pillow and blanket. Awake, slight drool. Very sedate -- similar to previous post ictal states and reactions to diastat.
10:20 pm -- vomit
10:35 pm -- vomit
10:52 pm -- last vomit

He didn't sleep very well but is resting this morning with no fever and no more vomiting.

Previous seizures:

January 26, 2007 -- started with vomit, big seizure, jerking, turing blue, rapid/erratic breathing, heart racing, very high fever 104. Called 911 and transported to Medical Center ER. He was given diastat in the ambulance. Found out he had pneumonia. Released after about 12 hours of observation. We saw you in the ER this day. We rescheduled his March 29th neurology appointment to March 20th.

March 20, 2007 -- we were on our way to our neurology appointment and Jack vomited in the car. I called your office from my cell phone to cancel the appointment. We got home and around 9:00/9:30 am Jack was on his bed breathing erratically and convulsing. I gave diastat immediately. The seizure stopped instantly and he slept for quite a while. He had vomited and had loose stools. Our pediatrician felt he had the stomach flu. When we rescheduled the neurology appointment the only opening was in July 2007.

May 11, 2007 -- this seizure was a lot like his most recent.
9:15 am -- small vomit
9:30 am -- acting very strange, blank look, still answering questions, but humming repeatedly and tossing his blanket up and down. His heart is racing. Called neurology and spoke to Joanne, asked to have you call me because I thought Jack could be having a seizure.
9:53 am -- normal temperature. He's now picking at the sofa.
10:05 am - teeth grinding. I called his pediatrician at this point and asked if it sounded like a seizure. She said absolutely and told us to go ahead and give him diastat.
10:10 am -- diastat given.
11:00 am -- My husband arrives home from work and we decide to take him to Medical Center's ER. We spent 13 hours in the ER. They find a sinus infection on the CT scan. The Peds resident talks to you on the phone around 8:30 pm. We are discharged at 3:00 am.

Prior to January 2007, Jack had only ever had two or three small starting spells, nothing like what I described above. We are scheduled to see you in the UPC next week on June 12th.

I hate playing phone tag and leaving messages especially after that nasty nurse's call last week. I did call and thankfully got the "nice nurse" and told her to be on the look out for a fax from us. I also breifly described what happened.

I also called his ped and she said let him rest now and call with an update later -- if he seems ill, she'll squeeze us in.

I must go -- but I wanted to ask for your thoughts and prayers...I'll update later this afternoon. Thanks for listening.

*~*~Edited to add*~*~

Here's the update after tons of calls this morning!

Jack is fine, he is not ill and will not need to see the ped. Jack's smiling, laughing, playing, singing and eating/drinking as usual. The neuro called back and we went over the notes I sent. I highly suggest sending notes before a phone call -- it helped keep my poor brain organized! He said it looks like Jack is having a seizure right around an hour after his meds are given. We give meds every 12 hours. He said his levels probably get too low and the dose doesn't have time to take effect. We are changing his meds from 2 times daily to 3 times daily to keep a more steady amount of meds in his system...starting tomorrow. We are to go for labs a week from today, the day before our scheduled neuro appointment.

I am not sending Jack to school tomorrow to try and keep him healthy for his surgery on Wednesday. So he only has one week of school between now and July 9th. Starting on July 9th I am going to have his nurse meet us here at the house and ride the bus with Jack to and from school. I also scheduled her till 5 pm so she can help with Jack for about an hour after school. I thought maybe she could feed him a snack, and perhaps give him a bath (both of which he looooves) and both of which would be a huge help if I had assistance.

I am so tired. I haven't slept in soooo long! I am just relieved that Jack is doing well. I think it's an easy dinner tonight...pasta and sauce maybe?

Thanks for your thoughts. I will keep you posted!

Special Needs Stroller

Jason and I were talking a few weeks ago when we were at the hospital visiting Morgan. We were walking with Jack towards the cafeteria. Jason asked if we could get a special needs stroller. I told him I don't think insurance would pay because we just got the wheelchair. When we're out we use an umbrella stroller. We haven't incorporated the wheelchair into every day life because he still needs a lot of practice on how to manually push himself. He does great at school -- the PT uses a HUGE ball and entices him to wheel down the hall to get the ball. The school has been FABULOUS with using equipment. Jack uses his walker most of the day -- even out on the playground. They are so great about not letting the kids in one piece of equipment for more than 15-20 minutes at a time. It's amazing because there are several kids who aren't walking yet and they tend to each of their needs so well. I am grateful for this.

With all of that being said, we are still using the stroller 100% of the time on outings. When we went to the seating clinic I originally wanted the Maclaren Major -- so I went online and started pricing. I happened to check ebay and found a brand new Maclaran Major for just over $300 compared to the $500-$800 they are being sold for! I used the buy it now feature and it should be here very soon.

I guess I just thought the wheelchair would be our ticket to Jack's freedom. He will get better and the chair is awesome, I just thought it would be easier for him. If he could use it independently there would be no need to get a stroller...but like most things it's going to take time and practice!

I guess I am just looking for reassurance that this kiddo will find independent mobility...and I am trying not to get discouraged because I am SO PROUD of everything he CAN do -- like using his walker and wheeling the best he can in his chair.