Thought this was cute...

My Life, My Love, My Family

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Puddin' Pie

So far, so good...

Jack's had a quiet weekend so far. He had one seizure on Friday evening and ZERO on Saturday and so far so good today. I am hoping the new med is finally working. Jack's neurologist called to check on him Saturday morning -- it was very nice of him! We see him on Tuesday of this week.

Morgan is getting big! She's sooo cute and full of energy! We've been having some problems getting her on a "normal" schedule (meaning SLEEP, SLEEP, SLEEP at night). She's very much a late night baby. We've tried everything and hope this phase ends SOON!

Morgan and Jack are adorable together. Morgan won't let Jack out of her sight and he is a willing participant in making her giggle. He'll hop like a bunny for her and she SQUEALS with delight. Last night he helped me give her a bath by scrubbing her toes and splashing water on her legs. He also loves to help with putting on lotion (sho-shin) and he'll smell her belly and say "yum" and top if off with a kiss. It melts my heart to see my little man so gentle and attentive to his baby sister. I sometimes have to remind him to be gentle because his hugs are very much in the category of bear hugs...lol.

Jack's continuing to amaze me with his walker! He's also pulling to stand using the wall and door knobs...I find him standing so many different places. His confidence is building -- and sometimes getting him into trouble!

We've been "practicing" with utensils for what seems like FOREVER! He got the fork down pat a while ago, but not the spoon. The scooping motion is hard for him and took a long time to learn. Last night I gave him a bowl of pudding and he managed to finish most of it with the spoon (without getting it all over). I was pleasantly surprised and really took stock of the moment. Sometimes things come when we aren't expecting them to.

Jack's also using two and three words together without prompting. Actually just now he said "fish on" which means he wants the fish tank lights turned on. The other day he said "Walker, side, shoe" which roughly translates into "Mom, lets get our shoes on and take my walker outside!" again, I am happy with how much he's learning, growing and changing. He's learning and retaining new words every day.

I will surely keep you posted on how we're doing this week!

Riding it out...

I spoke to Jack's neurologist this morning...I was so fuzzy headed, Morgan was up until 3:00 am -- (teething woes) and Dr. N. woke me from a dead sleep. What I got from the conversation is that he wasn't happy about yesterday's 4 seizures and we are increasing the rate of increase of the valproic acid after he did some weight calculations (mg per kilo).

He's on call all weekend and we see him on Tuesday. He also said to give Jack his meds as soon as he wakes up in the morning instead of waiting until 9 am -- because his night time dose isn't carrying over 12 hours.

I did ask him if this was "normal" for the situation (as in the bumpy road reference) and he said yes. We are hanging in there, and hopefully the increased rate will help get us seizure free faster!!

Even more...

Jack had a total of 4 seizures today. He's doing okay, but my nerves are shot. Will post an update in the morning....

More Seizures...

Yesterday morning Jack and I were lying in my bed and he had a seizure lasting several minutes. I ran to get the diastat and opened the back door because our dog was barking madly to go out and pee. I ran back to Jack and watched him and he seemed to be coming out of it so I did not give him the diastat. He was out of it for a little while and then was totally fine.

I know we are to expect this to happen until the meds are up to therapeutic levels -- but I still don't like it. It truly is like constantly waiting for the other shoe to drop. I can handle it, but the stress is getting to me. Every time I hear a bump or noise coming from the other room I run in expecting to find Jack having a seizure.

I realized that I had the dog outside and hadn't attached her tie! When I went to let her in she was gone. I called and called. Jack was still post-ictal and Morgan was napping and I didn't feel comfortable putting them in the car to scout the neighborhood...so I went out every now and then to call for her. Finally one time when I was out I saw her head pop up over the neighbor's bushes! She came running back all happy and excited. Poor dog had to take herself for a walk...lol. I am glad she came home!

Later in the morning Jack had a massive poopy that was gross and sticky and went up his back and down his legs...I ended up throwing away his jammies and he had a nice long bath. It was just one of those days.

He went to school and had a great day. This was his first day back since the end of September -- they have weeks off here and there because they are on the extended school year schedule. I wrote a note to the teacher explaining what to look for and I also told Jack's nurse to keep an extra eye on him.

Then, this morning he had another seizure at the breakfast table. I moved him to the sofa and carried the diastat along with us. It was shorter than yesterday's seizure and he's lounging and watching the Backyardigans "The Yeti" episode.

I hope once the new meds reach their therapeutic levels that we can say GOODBYE to seizures.

The Heart of Blogging...

I recently posted several links to posts that I defined as "The Heart of Blogging." I read another post tonight by Billie (Holland and Eden's mommy) that I really want to share with all of you. As I was reading I kept nodding in agreement. She truly took thoughts I've had swimming and swirling in my mind for years! Billie, I appreciate you so very much!

Perspective -- written by Billie 10/4/07

QUOTE:

Perspective

It could be worse. This is a topic that has come up on my blog, as well as in various other forums that I am a part of, several times in the past three years. How does a micropreemie mom react when their acquaintances or even friends are complaining about their full term healthy kids? They're not walking at 14 months. They're not talking in sentences at 2. They're picky eaters. They won't sleep through the night. Moms of twins complain about how much work their two normally developing kids are. Pregnant moms complain about how uncomfortable they are at 36 weeks, and they wish this baby would "just come already."

How should moms of kids with more severe disabilities react when they are barraged with the worries of other preemie moms worrying that their baby might have CP, when they are already holding their head up at 6 months? Or stressing out to the point of their hair falling out over a language delay at 15 months?

It's all a matter of perspective. I admit to having lost the ability to relate and be empathetic in certain situations, and I am sure that I have snapped, or said something that I probably shouldn't have more than once. More than once I have been guilty of at least thinking "stop whining," or "get over it," or "what in the world do you have to complain about," or "FOR THE LOVE OF ALL THINGS HOLY, COUNT YOUR BLESSINGS AND STOP WASTING SO MUCH ENERGY ON SOMETHING SO INSIGNIFICANT!!!" Most of the time I am able to bite my tongue and remind myself that their feelings are valid for their life and their situation. And they are. It's NORMAL for people to worry about their kids, even the little things. Had I not been thrown into the life that I have now, I would most certainly been one of those moms. I can be forgiving.

At the same time, I feel that people in general should be considerate of their audience. I have an analogy that I think most women can relate to... You see, almost every woman has some complaint about their body. They think they are too fat, their nose is too big, their belly pooches out too much, their boobs are too small, their hips are too round, etc. etc. etc. The list goes on and on. But it would be rude and inconsiderate for a woman of average or below weight to show up at a support group for obesity, and complain about being fat. It may be very real and true to her. She may be miserable and unhappy about her weight or her body and it may affect her life to a great extent. But it is still rude and inconsiderate of the audience. How should the women in the group react? Should they try to be empathetic and supportive of the skinny woman's feelings? Or should they put her in her place, and give her some perspective?

I wouldn't join a support group for moms of kids with CP, then moan about my child not walking until they are 18 months old. They have children who will never walk. I wouldn't talk to a mom who lost a twin about how hard it is having two. She would do anything to be in my shoes. I wouldn't complain to a preemie mom about how miserable my third trimester has been, and how uncomfortable it is to be 8 months pregnant. Really, it will just make her want to stab you in the eye!

Blogs are an interesting thing. When you are writing on a blog, you don't have the ability to really know and choose your audience. I think, on your blog, you can moan and groan about anything you want. That's what it is for. Your audience chooses you, and most of the time they do so because you write about something they can relate to, at least on some level.

I moan about things on my blog that I just wouldn't in other places. I don't complain about Holland being hospitalized with every little cold to someone who's child has cancer. I try not to complain too much about the severity of Eden's CP with someone whose child has severe quadriplegia, or impaired cognitive ability, or is nonverbal. I wouldn't complain about Holland having to wear her patch, or glasses, with someone whose child is blind. And I try not to complain too much about what terrible eaters my kids are directly to someone whose child does not eat by mouth at all.

At the same time, I don't want to lose perspective to the point that my friends can't talk to me just like they would any other friend. There will just have to be some give and take, by myself and by the people I encounter who know my story. I will try to remember that your feelings and worries about your healthy full-term kids are valid and very real to you. But you should also be considerate of your audience and not go on and on about how your kid who is in the 95th percentile for weight is a picky eater! At least use a disclaimer, such as "I can't imagine what you are feeling, because I feel so incredibly worried about my 35 weeker spending 5 days in the NICU."

It could always be worse. I need to remember that too. I am so blessed in so many ways. Eden is learning to talk. She has good use of her hands. She seems to be pretty bright in terms of cognitive ability. Holland is falling less, and is starting to run a little more smoothly. She can do a somersault. They are both improving in their eating. They both interact so well, and are interested in so much, and are cheerful and friendly and very happy most of the time! I am so very lucky. But you know what, even if they could do none of these things, I would still be lucky. Someone else will always have it worse, and even they might still be lucky in so many other ways. It could always be worse. But maybe it could be better too. Our feelings are all valid and need to be shared. Let's all keep it in perspective.

Seizure in the car this morning

Okay, I am officially sick of seizures...for ALL OF OUR KIDDOS. Morgan had her first RSV shot this morning and on the way to the ped's office Jack started having a seizure. I almost pulled over to give him diastat but we were almost at the ped's office...I pulled in the parking lot like a hot rod driver, parked crookedly and ran to Jack. He was coming out of it when I got him out of the car seat. We went in (I carried both kids) and I told the nurse Jack just had a seizure. She took us to a room right away and by then Jack was fine, just a little shaky.

Morgan had her shot and we're home now. Jack asked for a hotdog for lunch and seems slightly off, but I have seen this post-ictal state before. I cut his lunch into tiny-smaller-than-toddler bite sizes just in case.

I called the neuro and am waiting on a call back. <-- Wow, that was quick, just answered the phone and he said we'll continue on our current med schedule. I knew this would be the answer, but just wanted to report the seizure. The new med has not had time to kick in yet.

I don't like the uncertainty. I don't like being alone when it happens. I certainly don't like driving when it happens. I don't like not knowing what to do in the moment...call 911? Give diastat? Wait and see? I hate not knowing if it's the start of something bigger or if it'll just fizzle and stay a small seizure. As usual, I will keep you posted.

I am off to make a large pot of coffee and snuggle with my darling kids. My sweet babies who should never know any pain or sickness...I need a tissue now too.

Costume Ideas??

Morgan's costume was easy to choose and I can't WAIT to see it on her! You'll have to wait and see...too, wink, wink!

I've always had an easy time choosing Jack's halloween costume each year...let's take a trip down the costume memory lane...

2003 "Baby Elmo"

2004 "Tiger Jack"

2005 "Jack the Puppy"

2006 "Beetle Bug Jack"

2007 -- ?????

I have no idea what to dress him up as!! And no, I am NOT crafty, not in the least. I could probably cut two holes in a bedsheet and send him as a ghost but that's the oldest trick in the book, right? Hmmm...he loves the Backyardigans, especially Pablo, but the only costume I saw was waaaaay too expensive!!

Ideas, please?!?

Urgent Neurology Appointment Today

I wrote this yesterday:

I am concerned about Jack. As I posted earlier he had a seizure on Saturday. He ended up sleeping for a couple of hours afterwards. He was okay mood wise (we even went for a long walk) but then he went haywire. His mood was all over the place...he cried and raged...I forget when he went to bed but it was close to normal time. Sunday was a lot of the same -- moody, cranky, raging...then he fell asleep at 6pm and only woke up for meds a drink and a diaper and slept all night till 7am. I called his neuro to update on the seizure. He said he really thinks it is time to switch to a new med due to the fact that we increased the Tegretol 10 days ago. He said the mood is most likely from the meds (we've seen this before). He is fitting us in tomorrow at 9am. I have to take Jack for bloodwork in the morning at 6:30 so he can have the levels by the end of the day.I don't like seeing him so upset -- it's like he's possessed. It breaks my heart because I know he isn't doing it on purpose. It has been a "walk on eggshells, waiting for the other shoe to drop" kind of day.I will update when we get home tomorrow afternoon.

**UPDATE**

We discussed Jack at length and decided the best course of action is to reduce the Tegretol slightly and add Valproic Acid (Depokene). He said by using both meds we have more wiggle room and he won't be maxed out on Tegretol and still have seizures like he is now. Instead if the Tegretol covers most of the seizures, the valproic acid will hopefully cover the rest with room to increase the dose. Please keep your fingers crossed that the road to being seizure free and side effect free is a smooth one. Although I know there is the possibility for bumps along the transition...

Small Seizure

When we were on vacation Jack had a small seizure after breakfast one morning. When we got home I called his neuro and he increased his bed time dose of tegretol and said if that didn't work we'd switch to another med.

Well, this morning right after breakfast (10:00 am) he had another small seizure. He started with mouth movements like he was tasting something, grunted like his tummy hurt, asked for a drink and then some food (which I did not give him). I think he was feeling different sensations in his belly. It lasted only seconds and now he's really sleepy laying on the couch.

Another call in to his neuro I guess...

What meds are your kiddos on for seizures? I don't know what he would consider changing to...I wonder why the Tegretol isn't working like it used to? He's been taking it since he was 15 months old with fabulous control until January of this year.

Anyway, just asking for some hugs -- I HATE this.

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!!

Vacation Pictures!

Our vacation pictures are uploaded and ready to view!

September 2007

It's amazing when you visit the same place each year to see the difference in Jack's growth and development. He had an absolutely wonderful time! We all did. Although traveling with two little ones is tough -- it was certainly worth the experience. Vacations take on a new meaning -- we didn't relax one bit, it was tough work, and hard -- but the look on Jack's face when he saw the ocean was totally priceless! Morgan did amazingly well during the car ride...something I was a little concerned about. She loved going for long walks and spending time with Grandma Josie and Grand-Pauly.

Neuro Update

I spoke to Jack's neurologist yesterday afternoon. He agrees that the episodes were seizures. He said they were simple partial seizures.

Our plan is to increase his night time dose of Tegretol by 2ml. He's increasing the dose at night because of our experience with complete meltdowns when he has more medication during the day. So now he's getting 4 ml in the morning, 3 ml in the afternoon, and 8 ml at night. In a few weeks we'll have another blood level done and hopefully this will work. If not he said it's time to look into switching to a different medication.

We had a lovely vacation -- I will be adding pictures as soon as I find the bag that has my camera!!

Small Seizures?

Jack's last seizure requiring intervention was June 3, 2007. He had been having one about once per month since January 2007. We then switched his medicine schedule from 2 times a day to 3 times a day and it worked very well.

Over the last 6 weeks or so I've noticed what I think is a small seizure about 4 times. He'll start with what looks like he's tasting something --which is usually what he does when he's about to vomit and then have a seizure. His heart races slightly, his mouth moves like he's tasting something and he looks a little scared. He then smiles like nothing is wrong and moves about his business. These episodes only last seconds and don't progress any further. Afterwards he's a little clammy and pale.

We're still on vacation and he did this right before breakfast this morning. This does sound like seizures, doesn't it? We just had blood work done last week so when we return I will call his neuro and run it by him as well as check his levels.

The kids are having a wonderful time on vacation! If you want to know where we are think "Watch the Tram car please!", aggressive seagulls that steal whole pieces of pizza and chicken legs off of hot grills, Khor Bros. Ice Cream, Mack's Pizza...lol, it's the Jersey Shore!!!!

The sun rising yesterday morning -- beautiful!!

Where are we?

I'll give you a hint...



More to come!

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.