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.