Jack "writes" his name!

We have a two hour delay this morning because of snow...Jack is anxious to get to school so to pass the time he wanted to play "drawing" and write his name!

In this video you can hear him say "Write ah name!" and I think he gets a few letters...normally he's been able to say "J, A, C" which is amazing -- and so close!  He can recognize the letters of his name in uppercase letters as well.  It's the little things when added together really show his amazing progress this school year!

Here is the short video clip (he hardly ever stays still either, lol) enjoy and hope you all have a great week!




Edited to add Jack is playing with the Scribble and Write from Leapfrog

Pee Pee on the P-O-T-T-Y!!

Major milestone moment here today!  Miss Morgan Leigh decided today was the day she'd finally pee on the potty.  We'd been trying on and off with zero success over the past 6 months or so.  She'd just sit and make a "Pssssssst" sound with her mouth...we put it on the back burner over the holidays and this morning while I was running her bath water I decided to try again.  I wasn't expecting anything so I was very surprised when she hopped off and there was actually PEE in the POTTY, lol!  So it's officially on...potty training has begun!

Open Cup, Open Cup!!!!!!!!!

A milestone moment in our house and it was all Jack's idea!!

Out of the Blue...

Mark the date:

January 21, 2009

A milestone seemingly beyond reach.

Jack Riley Wilhelm took his first independent steps.  Two of them.

I am crying as I write this...

More details tomorrow!

Something to TALK About!

"Mom, more chocolate milk please.  Get it.  Okay!"

That's an EIGHT WORD sentance.

He's been ending his requests with "okay" a lot lately.  It's like he's answering for us.  Too cute.

Something to celebrate -- chocolate milk for everyone!

(pictured helping with groceries a few weeks ago)

"Reading"

Okay, well I know Jack isn't technically reading -- but his symbol recognition is really coming out! He names packages of food by the logos especially cereal.

This morning I was driving him to an appointment and we were going about 25 mph past walmart. You can't see the parking lot or the building, just the sign and he said "Store...balloon!" In fact we've always called it the balloon store because he gets one of those smiley balloons nearly every trip!

He also knows McDonald's (he'll start to sing old Mcdonald had a farm, and then ask for fries and soda!).

This is HUGE because symbols and abstract pictures are a huge part of using a communication device or picture schedule like PECS. If you would have asked me even a month ago if Jack could recognize symbols I would have laughed you out of town and said "no, we must use real photographs."

This is simply a huge milestone and I can't wait to start cutting out more logos!!!

Jack had his best day in a long time yesterday.  The school sent a glowing report on how he did during class -- science was his favorite subject, and he walked all over the school indoors and outdoors with his walker during PT.  He was happy and attentive and it continued into the evening as well.  He didn't cry or meltdown once.  It was the old Jack Riley!  I pray it stays or at least continues in this direction!

Some Great News...

Even though we technically shed the label a while back..."FTT or Failure to Thrive..." I think not!!

At 5 years and 6 months:
your child is 44 pounds, and that is at the 55th percentile for weight.
your child is 45 inches, and that is at the 65th percentile for height.

Jack was not even on the chart for the first 3 years of life...then even in his 4th year he was always below the 3rd percentile.

We tried everything from duocal, pediasure, to resource 1.5 and even benecalorie...met countless times with the feeding/growth clinic, meticulously counted every calorie only to continue to hear how he was so small.

This isn't the first I've heard of this happening in this 5th year for micropreemies. I just wanted to tell you it can happen, we're proof!! And it happened when we finally gave up on the calorie boosters and let him eat anything and everything he wanted. He's even more active and probably burns the same amount, if not more calories than he did when he was FTT.

So have hope, hang on, and know your child will grow!

PS -- Jack is napping and so far no more seizures -- will update soon!

First Day of Kindergarten

Our Jack Riley is at school right now. It's not that I'm not used to him being in school -- he's been attending preschool for 2 years. It's just the fact that he's officially a Kindergartner now, with a full day away from mom.

The morning went well...he woke up early and had a big breakfast, a bowl of corn pops, 4 pieces of veggie bacon, and 8 oz of chocolate pediasure. He had his meds and combed his hair. I packed his little lunch bag last night: PBJ sandwich, apple sauce, fish crackers and graham sticks...as well as some pediasure. Packed lots of diapers, 2 extra sets of clothing, and his diastat. He was ready to go! We stopped by grandma and grand-pauly's house to pick them up. They wanted to see Jack go on his first day...I was grateful for the company.

We arrived at the school about 20 minutes early. We signed in at the office and walked the hallway to Jack's classroom. Jack spotted the little sink and immediately was fixated on wanting to play with water. The sink is not meant for playing and this upset him GREATLY. He started crying and throwing his entire body backwards in his wheelchair. The teacher took him over to the toys, and on the way there Jack threw himself backwards and HIS WHEELCHAIR TIPPED BACKWARDS...(yes, it does have an anti-tip bar -- but apparently, it's not 100% anti-tip). He was a little stunned, but thankfully unhurt. This has never happened before -- of course it happens within minutes of starting his first day. We made sure he was okay and actually that stopped him from yelling and he calmed down. We said our goodbyes and he was so brave. He said "see ya...love you, bye" a couple of times and we left.

I'm okay, really and I know as the days go on and I learn how he's doing and what the daily routine is I'll be even better. No one ever said it was easy to let go...because, well, it isn't.

Pictures to come ; )

Conversations with Jack Riley...

As I mentioned earlier, Jack's language and talking are really taking off. I wanted to take the time to post some of my recent conversations with Jack. Remember, this is a kid who had no words or gestures until after his 3rd birthday. Even then, it was "up" "ball" and "ba ba" for drink. This is the kid who was labeled "non-verbal" by the speech therapist as he entered preschool. This is my son, who now, uses what words he has to continuously amaze his momma.

It's a week night and I decide to take Jack to McDonald's for a treat...just us. I tell him we're going to the "fry store" to get a bag of fries...since he can't say McDonald's he starts singing the tune to "Old MacDonald....had a farm....eee, iiii, eee, iiii, oooooo"



"More, drink, please!" "Wa wa, ice, please!" The man likes a cold one every now and then.





"Vacuum, keen up" as he pretends to vacuum the floor in his room. "Mom, help." long pause... "Broom." I find the broom for him. "Veep" (sweep). "OOVE (move)!!" as he goes to town on cleaning he wants me out of the way..."All done."





"cook fries" I tell him okay, he says "vait (wait)" long pause. "Bell" (yes, we cook fries in the toaster oven and wait for the bell). Then, "HOT!!" as I am pulling them out of the oven.

It's not quite dinner time..."hunger" pause "eat?" I reply "Not yet, let's wait for Daddy!" He thinks for a minute..."Da da...herk (work)" pause...."Phome?" Then we call daddy at work and tell him Jack's hungry!!

There are more -- and of course more to come! I am just so proud of my soon-to-be KINDERGARTENER!!

More photos in the August 2008 Album

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Morgan!!!!!!!

MORGAN TOOK HER FIRST STEPS!!!!!!!!I can't believe it! She took her steps from Jason to me about 4 steps on her own -- then later about 13 or so steps across the room to me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! YAY!

HAPPY BIRTHDAY MORGAN!

Dear, sweet Morgan, HAPPY FIRST BIRTHDAY to my beautiful little girl. You are such a wonderful part of our family, we love you, Happy Birthday!!!!!

WOW!

Every day she's getting closer to that first step! PS -- how CUTE is she?? lol, a bit biased, I know!!

up...Up....UP!!!!!

Two kids -- two different milestones...one happy ma ma (although with a few gray haris)!

I find Morgan doing this.....EVERYWHERE! GOOD JOB MORGAN!!!



Now here's Jack -- what a major feat!!!!!!! WAY TO GO JACK!

Puddin' Pie

No Words Needed...

Neurosurgery Check Up

We had a check up with Jack's neurosurgeon yesterday. He's been Jack's NS since he was born. Jack has hydrocephalus which required a vp shunt to be placed when he was in the NICU. Thankfully Jack hasn't had any problems with his shunt and we're on a yearly check-up schedule with the NS.

Jason came home early from work to be with Morgan so I could take Jack to the appointment. We left early and I decided to take his walker. We parked in the parking garage and I carried Jack and the walker the short distance to the garage elevators. Once we got to the elevators I put Jack in his walker and he was so excited! He walked into the elevator...stood there while we went down and I helped him turn around so we could walk out. He walked all the way down the ramp to the sliding doors at the South Rehab entrance. He wasn't paying attention and he got his walker caught on the sliding door. A nice gentleman held the doors from closing and Jack maneuvered and made his way through the doors. He then walked down the corridor and made a right hand turn into the waiting area! I was so proud of Jack.

We signed in and as we were waiting for the doctor he took several trips down the long hallways...a few times he asserted his Independence and wanted to go in a different direction. For the first time he was on his own. It was amazing to see. I liked that he didn't listen and insisted on going back to the bathroom instead of back to our exam room! Normally Jack doesn't have a say. He's usually in his wheelchair or stroller -- both of which I control. He did take instructions well and I was able to verbally instruct him on which way to turn or how to get "unstuck" -- it was truly a milestone day!

We met with the NS and he was happy to hear that Jack hasn't had any signs of a shunt problem. We talked about his candidacy for surgery to reduce spasticity. We talked about SDR surgery -- he didn't think Jack was a good candidate due to low muscle tone in his hips as well as dynamic tone (tone that changes with positioning). We also talked about a baclofen pump -- which he does feel Jack would be a good candidate. There is a test they do to see how the medication would affect Jack. If we decide this is what we want to do we can schedule the test. He told us it will look as though Jack swallowed a hockey puck -- Jack is small and has skinny little belly and the pump which is placed in the abdomen will protrude out. The numbers he gave us for the pump system that they use were refilling usually happens every 3 to 6 months in the clinic. It is done by a needle into the pump. The entire system usually needs replaced about every 7 years because the battery dies. I asked if placing the pump puts Jack at risk for a shunt infection. He said he's only had one patient with a shunt end up with a baclofen pump site infection after surgery and the shunt did NOT get infected. He said patients with shunts usually end up needing less medication from the pump because the shunt helps move it along the CSF tract. I thought that was an interesting tid-bit. There are risks -- infection after surgery, pump failure, over or under medicating (both of which can be extremely serious). The pump is programmed by a human being so there's risk of human error. The benefits are many though. The pump puts medication directly in the spine which goes directly to the spastic muscles. He said he feeds the lining high which would greatly reduce the spasticity in Jack's right arm...enough to be functional with a lot of therapy. Jack's legs would benefit making walking easier. It's a tough call. He gave us some information and a video to watch. Silly us, we don't have a VCR anymore -- just a DVD player so I am going to have to find somewhere to watch the tape!

We are taking our time making the decision. There is no rush. I would love to hear from anyone who has been though the surgery themselves or have kids with the pump. I will keep you all posted on what we decide.

Today is Jack's first day back at school for over a week! I will miss him :( I am sure he'll be so excited when the bus gets here!!

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.

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!

Family Update!

Hi everyone! If you see Jason today wish him a happy 29th birthday!!!!!!!!!!

HAPPY BIRTHDAY DADDY, WE LOVE YOU!!!!!!!!!!!!!!!!


Daddy and Jack at Bob Evan's

Daddy Changing Morgan

Mommy feeding Morgan

Thankfully Jason took another day off from work yesterday. I am so, so, so grateful for that! I am still in A LOT of pain on occasion...I need to take pain meds on a more regular basis instead of when I start to feel bad. Also I know I need to rest -- but as we know from before having a babe in the NICU makes it tough. There's no place I'd rather be than with my children.

We went to visit Morgan while my mom took Jack to school...only to get a phone call saying that Jack didn't have nursing coverage! I burst into tears while holding Morgan. I think I startled her nurse...(oops) Jason offered to go get Jack while I stayed with Morgan -- but I wanted to talk to Jack's teacher and of course see my little man so I left too.

When we got to school his teacher met us in the hallway -- Grandma was in the classroom with Jack and daddy was watching Jack through the window. Miss L. said there was a little girl at school who was diagnosed with an MRSA skin infection and she though we should know right away because I have an open incision and of course because of Morgan in the NICU. I broke into tears for the second time in an hour...I made Jack's teacher tear up too! NOT my intention!! I thanked her for the information and told her we would call the NICU right away and see how to handle the situation. One good thing (and to think everything happens for a reason) Jack had been sick and out of school almost a week and yesterday when he returned the little girl with the MRSA infection was NOT in school...so his contact risk was as low as it could be...which is exactly what the NICU said when we called. THANK GOD.

Meanwhile Jack was working with the PT and when they opened the door he was walking with forearm crutches (with help) towards me!!!!!!!! His face was priceless! He LOVES them! He went all the way down the hall with help!!! How amazing!!! I immediately went into PT mommy mode and excitedly asked if they had any extra crutches that we could borrow...we went back to the gross motor room and YES -- she found some for us!!!!! I can't tell you how awesome he looks with them. I had always heard crutches were hard to learn and you have to have very good balance and motor planning to use them...something that comes with age and practice. I can't believe how great he did on his first try. OH AND GET THIS...HE DIDN'T HAVE HIS BRACES ON!!!!!!!!!!!! Grandma isn't too familiar with putting his braces on and since he was still sleeping when we left I told her just to use his regular sneakers for today. The PT said she was amazed at how well he did and we should try this on occasion without braces to help build strength.

When we got home I wanted to call the nursing agency and demand better knowledge of when Jack will not have coverage. I asked Jason to call because of my weepiness...I didn't want to cry over the phone. As we were walking in Jason realized he could not find his wallet. We looked EVERYWHERE. No where to be found. I was starting to feel nauseous from pain and Jack was crying, and I missed my baby girl...a low point in the day. We called all of the credit card companies and our bank and reported the lost wallet. Now Jason is without ID, or means to buy anything! We share most of our credit cards so that means mine were cancelled too. I gave Jason the only card I have and I'll use our bank card...(we never carry cash anymore). So now he has to get a new driver's license and stop by the bank in all of his free time. UGH.

I HAD to get back to see Morgan so after Jack has his afternoon snack we went right back to the NICU. We haven't let Jack back to see Morgan because we know how important it is to keep the little babies healthy. So daddy went back first and Jack and I hung out in the Ronald McDonald Family Waiting Room. We spent countless hours in that room when Jack was little. It's so strange and familiar to be back there again. Only this time we know Morgan will be okay...there is no life support or neurosurgery...no question of future outcomes or mortality rates...just a "feeder and grower" a term I was so jealous of when Jack was in the NICU!

Morgan is doing great. Her only remaining issue is bottle feeding. She's been nippling some, but not drinking a whole lot through the bottle. Although when she does, her suck/swallow/breathe reflex is great...she just tires quickly and we give her the rest through the tube. We are still looking at next week for homecoming!!!!! Please cheer Miss Morgan on -- and she'll be home soon.

We stopped at Bob Evan's for dinner because Jack kept telling us he was hungry!! I forgot you can order breakfast there all day so that's what Jack and I did! He ate like a horse and we had a nice time as a little family...and it makes me anxious to have Morgan home and a part of our little family too.

When we got home on our kitchen table sat a perfect pink cake with tiny little confetti...in our refrigerator there was a huge lasagna, salad and bread sticks as well as a big chicken pie and broccoli salad...Steph and her family have provided us with dinner for the next week! Again, I teared up but because I was happy this time. I am so grateful to have my friends and family. Not just in bad times, but good times too. To my friends - I love you and you mean the world to me! To my family - I am so grateful to have a wonderful family and to have married into such a great family as well. We are surrounded by the most amazing people and I am so glad my kids will know this kind of love and support. Thank you all so much.

MAJOR MILESTONE ALERT!!!

Pinch me -- seriously!

I "tweaked" Jack's walker tonight -- took off the pelvic stabilizer and the right forearm support basically took away the extra supports...because he does well and I wanted to challenge him a little more.

Anyway, I turn for one second to get something and when I turn around Jack is getting himself up to standing in the walker. He placed his left hand and made a totally fair attempt at putting his right hand on the walker too. Then he took a step with it.

HE USED HIS WALKER TOTALLY, COMPLETELY, UTTERLY INDEPENDENTLY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I called Jason right away and he was so proud!

Anyway, Jack's doing it like an old pro now.

Oh, and to make it even more amazing is he didn't have his braces on (today was an inservice day and we made it a jammies day).

Again, I'll try to get it on video asap!

It's really amazing!!! He's really getting there!