Random things...

Morgan had her 4 month check up last week. I ended up taking Jack along to the appointment because he was due for a booster shot. The stars were aligned and everything went smoothly! I took Jack's wheelchair and carried Morgan in her carseat. The only trouble I had was getting them both through the door but another mom and her son came to our rescue! We didn't wait long at all and both kids did amazingly well with the shots. Morgan's 13.5 lbs and following the growth chart nicely at around 50% -- not adjusted for prematurity. The pediatrician said she would call and find out whether Morgan qualified for RSV shots. We weren't holding our breath because the cut off is usually 34 weeks and she was born at 34 weeks and 1 day. A few days later I got a call and SHE'S APPROVED!!!!!!!!!!!!!!!! No fight, no calls to make, she's going to get them!! I was totally not expecting her to! This is a relief because I am sure Jack will be bringing home lots of bugs from school this winter.

Recently I've realized that Jack does so much better with the Reverse Kaye walker vs. his Crocodile Walker. I had a pit in my stomach thinking we made a mistake getting the Crocodile and that we are basically stuck with it and insurance would not pay for another walker. On a whim I decided to check ebay. Again, someone was looking out for us! There was one in brand new condition Reverse Kaye walker for sale (buy it now) for $60. I purchased it immediately!!!!!!!! They retail for several hundred dollars. When the woman selling the walker emailed me about shipping, we started a conversation about walkers. Her son is now 6 and a half and just "graduated" to using the CROCODILE WALKER! She said her son did better with the Kaye walker at first too. It came by the end of the week and I could not be happier. I'll have to get some video of Jack strolling along our sidewalk out front -- he does amazingly well. His new DAFO's should be in any day now and not a moment too soon. His current pair are just too small. I am not sure if I am going to even wear them on him today when he goes to school.

A cute Jack story! Jack was playing in the living room and I grabbed my keys to go get something out of my car. I passed by him and he said "Bye bye" and I said, "Mommy's not leaving -- I'll be right back" which he replied "Go bye bye?" and I smiled and said "No, mommy is just going to the car honey, I'll be right back!!" I ran to the car and when I came back in Jack had both shoes lined up perfectly on the mat at the door! He really wanted to go somewhere and I obviously didn't get the hint the first time...LOL!

Well, I have to run! Morgan just woke up....told you this was very random! LOL!

Crying Times...

Sometimes we're happy other times we're...well...not happy.

The BIG Three-Zero...

August Pics

Click the album link below...

*~*~August 2007~*~*

The Heart of Blogging

Sometimes through my day I think about a virtual conversation I've read. I wanted to share some of those with all of you...

Heesun at Special Survivors writes about Be"longing" So many times I feel alone in my thoughts and to have someone across the country or world take the words right out of my head is amazing.

Dream Mom writes about the Gray...areas in a special child's development that are neither black or white or clear cut. She was able to describe a feeling I had no words for.

Lisa's thoughts mirror my own...here in her Dear Friends post.

Mel tells us More About Crew. Her mommy love shines through in her writing and makes me well up each time I read it.

Jacqui says what's Wheelie on my mind about being Wheelie Obvious.

There are so many more posts I would love to share -- but I won't overwhelm you and I'll save them for another day. To the authors -- thank you for opening your heart and sharing your life with me.

Help With Comments...

Can someone help?

I switched to haloscan comments and all of my previous comments were gone...I wasn't aware this would happen. Is there a setting to get them to appear? For now I switched back to blogger comments because I don't want to lose those precious conversations!!

New DAFO'S

Jack was casted today for new DAFO braces. He grows so quickly!! This will be his FOURTH pair already! I decided to try and brave an outing on my own with both kids to somewhere other than my mom's house. I chickened out at the last minute and called a friend to see if she could tag along and play the role of extra hands, baby wrangler, and preschool song singer! She happily obliged thank GOODNESS!

Morgan was less than happy to be out in pouring rain and in the car...Jack started to get nervous when we got to the parking garage at the hospital. Both kids were crying by the time we made it to the orthotics area. I am so glad my friend came along -- and I learned I probably could not do a medical appointment with both children. Jack needs me to hold him because he can't walk or climb by himself -- the examiners need me to hold him and I of course want to hold and comfort him. Morgan is not happy being still. She needs to be moving at all times unelss she's sleeping which she prefers to do only in her bed. Long story short it will be a LONG time until I brave a medical appointment with both of them ; )

Jack is trying a new product from Cascade DAFO -- it's called the softy brace. It's functionality is exactly the same as his current brace. The difference is on the inside.

Cascade DAFO 2 Softy

The indside is soft and good for those prone to sores, hard to correct, or boney feet. I wouldn't say Jack is truly in any one of those categories but after talking with the orthotist today I came to the conclusion to try them especially because the functionality of the brace is exactly the same so why not add more comfort?

Jack starts school tomorrow. I am sad. I always get sad when he has to go back! The bus will be here at noon and he'll get home around 3:45. That's longer than usual -- the driver must have some other stops after Jack! This is his last first day of preschool!! :( You know what that means? He'll go to Kindergarten in just one short year!!! Oh where has the time gone?

Monday Memories...

March 2003

Just born

March 2004

1 year old

March 2005

2 years old

March 2006

3 years old

March 2007

4 years old

Quick Update!

Morgan is doing better than Jack -- she still has some coughing and a runny nose but no fever and is generally happy and eating.

This morning Jack had an appointment with his orthopedic surgeon and he was very miserable. He's had a low grade fever, lots of coughing and sneezing. He's resting now and if he's still feverish tomorrow I'll take him to be seen by the ped.

The ortho said his hips look stable and he only wants to see him back in a year!

Thanks for thinking of us!! Jack thought it was very funny to be in Morgan's crib!

Sickies...

Bad news -- both Morgan and Jack have a cold. Jason had been sick for several days with a cold and we were trying to be as careful as possible not to expose Morgan. Yesterday afternoon she started with a runny nose, sneezing and coughing. She does not have a fever -- please keep your fingers crossed that this passes quickly with no intervention needed.

As some of you know we kept Jack basically quarantined under doctor's orders due to RSV, etc. He only got his first cold at 18 months old and his first antibiotic at 24 months old. This is scary and new for her to be THIS YOUNG and sick.

The doctor's office said to run a cool mist humidifier, use saline drops/nasal suction about 15 minutes before each feeding and to call right away if she runs a fever or has labored breathing.

She's acting more tired -- but is eating well. Even though she wasn't as early as Jack -- she is a preemie and I know how awful illness can be for any baby, especially preemies.

Jack started last night with a runny nose and today has been coughing, sneezing and generally miserable. Both kiddos are sleeping right now -- hopefully getting rest so they can get better!

Thankfully Jack did not have a seizure with this illness. Usually he has a seizure before we even know he's sick. I am keeping an eye out of course -- but I think we're going to skip the seizure this time.

I'll let you know how they're doing...

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!