19 Weeks!

From BabyCenter.com
Your baby weighs about 8 1/2 ounces, and he measures 10 inches, head to toe. His arms and legs are in the right proportions to each other and the rest of his body now. His kidneys continue to make urine, and the hair on his scalp is sprouting. This is a crucial time for sensory development: Your baby's brain is designating specialized areas for smell, taste, hearing, vision, and touch. If your baby is a girl, she has an astonishing six million eggs in her ovaries. They'll dwindle to fewer than two million by the time she's born.

I can't believe it's the half way point. I am just 6 weeks from the time that I delivered Jack. Amazing. I pray to make it way past that point. Although in my mind I've come up with some contingency plans...it's what's getting me through! I know, no matter what, we can handle anything!

The end of the week is a busy time. Jack goes for Botox injections tomorrow at CHOP -- we have to leave at 5 am -- yikes!! Then another BIG DAY!! Friday, we have our ultrasound, and cervical measurments. Please keep our little family in your prayers.

MRI Results are in....

No shunt malfunction or enlarged ventricles -- he's in top shape there...BUT -- he does have a deep infection in both ears. We go back to the ped tomorrow morning for another exam and more antibiotics. I m so relieved to know it's not his shunt -- and to have an explanation for the ongoing pain, miserable moods and bad behavior.

For those that are more familiar with ear infections...Jason and I feel this could be the same infection he was treated for right around Thanksgiving and then again at Christmas. Both times he was given Amoxicillan. I am sure she'll prescribe something stronger -- but certain abx interact with Tegretol, like Zythromax. What do you kids usually get for a stubborn infection?

Also, 5 days into the infection we went back due to pain -- she checked his ears and said he was all clear -- which lead to the MRI to check his shunt. We continued to give him the meds of course, but how could his ear look all clear? Also, initially she only saw the left ear infected, now the MRI says a deep infection in both ears. What kinds of tests can she do to make sure we get it for good this time?

No Results Yet...

We don't have the results yet. Jack did very well under anesthesia although we had a scary breath holding moment -- but all was fine.

I must run -- Jack is very groggy and in need of some cuddles.

THANK YOU so much for your thoughts and prayers today.

I will update as soon as we hear.

Hopeful...

Jack's symptoms subsided right around dinner time last night...we watched him closely and he just seemed tired. Jason and I are really not sure what to think. My thoughts last night were if we needed to take Jack to the ER we would -- but everything remained quiet. He woke up at 2:30 am for the day??? But was not crying -- just awake. He at breakfast without a fuss and we both napped this morning to make up for the 4 hour gap last night!

I hope tomorrow's MRI shows everything is okay with his shunt. I will keep you posted.

Ruling out a Shunt Malfunction...

Jack started with a cold/ear infection right after Christmas. We went to the peds office on Friday and were given a 10 day course of antibiotics. Today is day 5 and while the fever has subsided his pain and crankiness are at an all time high. We went back to the ped this afternoon to see if the infection got worse. To my surprise it's completely GONE...all clear! That is a good thing, but Jack's definitely acting very sick and as though his head is in pain. Motrin and Tylenol keep him from screaming his head off, but he's got a very short fuse and only wants to lay on the sofa or on the floor. Right now he's playing a little with some toy cars, but moaning/crying in between.

At the peds appointment she had her office set up an MRI to rule out a shunt malfunction...we go Thursday morning at 11 am...and of course if he gets worse we'll head straight to the ER. We want to be doubtful that it's his shunt because he's not vomiting, having seizures, etc. It's a little frustrating because those are not always the only signs of a malfunction/problem. All I know is there's a problem and since Jack can't tell me specifically what hurts we must rule out a shunt malfunction.

To those who've been there, what are your kids usual signs of a problem? (((hugs))) and thanks in advance.

PS -- Christmas pictures are in the DECEMBER ALBUM

The Croc and the Keekaroo...

I know it sounds like I'm talking about the zoo -- LOL!!

They both arrived yesterday.

I am floored at how much I already LOVE the new equipment...take a look!

The Keekaroo with the tray


The Keekaroo without the tray
LOOK at how STRAIGHT he's sitting!!


The chair is excellent quality. I ordered the padding and it looks durable and comfy. It did require assembly, but it wasn't hard. I highly suggest this chair!

Now, the croc! At first it was iffy -- Jack was leary of the vendor guy and didn't know what to make of the croc walker. After the man left and after Jack had his nap we tried again. It's so adjustable it's got literally hundreds of configurations. It comes with a little pouch to hold the allen (alan??) wrench. He can steer and everything!! This is something he couldn't do until this afternoon! His walking was limited to a straight line! Now, he's all over the house!!! His first task was to go to the Christmas tree (laughing all the way)!!!



I hope to bring it with us more places because he truly is independent with it (except getting up into it, but we'll work on that!) He needs room to roam! I was thinking of the corridors at the hospital (let him run over a few people -- ha ha) or the mall early in the morning before the stores open. Of course the mall will wait until after Christmas. Any other indoor ideas?

Jason was amazed too. This isn't just a subtle difference -- this is a jaw dropping, jump up and down difference!

Jack's Christmas Program

The kids were so cute. They wore reindeer antlers on their heads and sang several songs (although most just looked a little stunned to have an audience). I was giggling through tears. It was so sweet and so cute! After they sang their songs the kids got a HUGE surprise!!! SANTA CLAUS came to visit!!!!! Some were scared, some seemed indifferent, and others seemed rather happy to see the man in the red suit! Jack was all three!

Jack and Miss L. his teacher.
He was asking her if he could come sit
with mommy, grandma and grandpa!!

Jack takes a "cookie" from the
"cookie jar" to give to Santa Claus!!

HI SANTA!!!!



Jack Tells Santa his
Christmas list!

A New Template...

I felt like a change :)

The Keekaroo...(funny name, I know)

Oh, wow -- strange how things happen. I was browing American Baby magazine and found a small advertisement in the back for a chair that looks a lot like the tripp trapp chair!

It's MUCH MUCH less expensive and the ad had a code for a FREE TRAY! They also pay for shipping too. The chair is designed to fit a child (Typical or SN) from 6 mos. to 15+ years!







Check it out at:

http://www.keekaroo.com

With the chair, cushions, and free tray my total was $175 -- I am thrilled considering the ordeal we're having with the feeding chair and insurance.

Yay, it's a good day!

The CROC is COMING!!!!!

WOW!!! What a great Christmas present!! Jack's walker is going to be delivered on Dec. 20th!!!!! The rep will come to the house and everything!!!!



This has been since JUNE!!!! Wow, I never realized how s-l-o-w of a process getting DME is!

The Wheelchair is on order and several pieces have arrived at the Philadelphia office. We'll have to travel to Philadelphia (2 hr trip) to get the chair -- could be before Christmas too! I am excited to get the chair too. I will be waiting for his next IEP meeting to send it to school with him.

Does anyone use a wheel chair at school? I have to be sure he won't be "stuck" in it all day -- I know the school is great with getting kids in different postions/equipment throughout the day but I really want to emphasize that it's to be used in place of the cart he uses now.

The feeding chair is another story! Our insurance denied the claim because the say it's not medically needed and they won't pay for "comfort" features or items that make it easier for the caregiver. It's for safety, positioning, etc. Jack is getting dangerous in his booster chair! He's too big and when he rocks I am afraid he's going to tip the dining chair! I am thinking of calling the school to see if we can borrow something -- perhaps a tripp trapp chair? We are appealing and I haven't heard yet whether or not they will cover it. I am not getting worked up over it because to me the most important items are on the way!!!! YAY!

Any ideas on what to do for Jack in the meantime (inexpensive ones, anyway?) this is what he uses now: (this pic is almost a year old -- so he's MUCH bigger now in the chair)...

MFM Check Up

Everything went well today. The bean has a great heartbeat! It was so neat to hear. It was a rather quick and uneventful exam.

I have to go for blood work next week and then in 3 weeks I will return for:

• Urine Culture (make sure the nasty bug is GONE)
• The HEAD to TOE ultrasound!!
• Cervical Measurements
• Quad Screening results

At that time we will most likely know the sex of the baby bean!! Wow, it seems to be going so quickly.

Bean's been very active -- I noticed a lot of movement yesterday and I got up to use the bathroom at 5 am, and stayed awake for a long time feeling bean shake and dance. It's like a tiny flutter -- so sweet to feel!

Anyway, Jack's not feeling well -- he has a slight fever. This will be his 4th illness since Thanksgiving. That's basically every day since...so I am going to run and get jammies on him so we can cuddle in front of the tv till bedtime!

15 Weeks Today!

I love this cartoon! While I haven't gone quite that berserk, I have been madly craving vinegar!! Pickles, pickled veggies, pickled beets, pickled eggs, salt and vinegar chips...oil and vinegar salad dressing, stuffed olives, just to name a few!

I am knocking on wood -- I think I am finally rid of my bladder infection!!! Thank goodness. Bladder infections are no fun, especially when pregnant. I will have a urinalysis tomorrow to be sure the bacteria count is down or preferably ZERO! I am currently taking Macrobid -- which is not a fun pill. It makes me sleepy, dizzy and sick to my stomach (and no, it's not all of the vinegar...LOL). Two more days of pills left.

From BabyCenter.com



15 weeks:
At around 4 inches long, crown to rump, your baby now weighs about 2 1/2 ounces. He's busy inhaling and exhaling amniotic fluid, which will help develop the air sacs in his lungs. His legs are growing longer than his arms now, and he can move all his joints and limbs. That means his hands are more functional, too. Sweat glands are appearing, and although his eyelids are fused shut, he can sense light. If you shine a flashlight at your tummy, he's likely to move away from the beam. There's not much for your baby to taste at this point, but his taste buds are beginning to form. And if you have an ultrasound, you may be able to find out whether your baby's a boy or girl! (Don't be disappointed if it remains a mystery, though. Nailing down the gender depends somewhat on how clear the picture is and the position of your baby during the ultrasound; he may be curled or turned in such a way as to keep you in suspense.)

I will have another update tomorrow after my MFM appointment! I don't know if they are planning an ultrasound or not -- I know we are going to discuss the injections which we've decided against, and I will be getting the quad marker screening done at the lab (for genetics).

Till tomorrow!

Jack's Report Card...

The first score was from June, the second score is from December. There have been slight improvemets, no regression and overall looks pretty good to me!

I can't believe it will soon be a year since he started school!!!

If I had to "grade" him at home, or for outpatient therapy some of the items would be marked mastered. I understand the importance of measuring at school. It's a different environment without mommy or daddy, or a one on one therapist to give cues or encouragement!

I am very proud of our school boy!!

M - Mastered
I - Improvement
SI - Slight Improvement
NC - No Change
R - Regression

Imitate at least 5 consonant vowel combinations (mi for milk, ba for ball, etc.) -- SI, M

Build a vocabulary of at least 20 words and use two word utterances -- NC, SI

Initiate requests (verbal, signs or pictures) 10 times a day -- NC, NC

Follow one step directions -- NC, NC

Identify 30 vocabulary words (point to object or picture) -- NC, NC

Use two hands together to hold materials steady and use walker -- SI, NC

Visually attend to a book for at least 60 seconds -- SI, I

During book time visually locate a familiar object or character 4/5 times. -- SI, SI

Use walker in classroom independently -- I, I

An Update, Finally!

I feel even though I am taking it "easy" we've been busier than ever! Jack is doing very well. He's had somewhat of a cold for over a week, but it's not keeping him down at all. Just lots of sneezing and tissues...no fever, no crankiness -- so I'll just keep an eye on it.

I took Jack for his EEG last week. If I haven't mentioned it before, we do NOT enjoy these tests...I did have to go solo, but I asked for someone there to help me restrain him. I don't have the results yet -- probably in a day or two. I am still scraping the glue off of his gorgeous little head! like anything though he just moves on and doesn't hold a grudge.

We picked up Jack's new braces yesterday -- and I must remember to write a note to school to let them know he may be awkward in them a few days until he gets used to the bigger size. They aren't any taller than his last pair but the "shoe" size went from a 9 to an 11 and 1/2...that has to be strange to all of a sudden have your feet two and a half sizes bigger.

I hope everyone will say a prayer for grandpa Bob this week. He's having a cardiac procedure done to open an artery. He had a heart attack several weeks ago and spent some time in the hospital. He's resting and healing and hopefully will continue to feel better and better as the weeks go on.

Grandma Linda and Brian are in our thoughts and prayers too. Brian spent a few days in the hospital recently -- we hope you're feeling better soon!!

Grandma Josie is totally recovered and back in action!! Woo hoo!

NO MORE FAMILY IN THE HOSPITAL PLEASE!!!!! This is an ORDER!!

I am feeling great with the exception of a recurring bladder infection. Hopefully the new meds I am on kick it out of my system for good. UGH! I hate taking medication while pregnant, but an untreated bladder infection can be very harmful for the baby and mommy. I have my 15 week check up on Thursday -- tune in at the Bean's Blog later this week!

I wanted to share Jack's Wishlist from Wal-Mart, um, errrr, I mean from Santa, just in case any of the grandparents were stuck for ideas this year for Jack. If you already got something that's on the list, let me know and I'll mark it as purchased.

Wow, it's time to go get Jack ready for school! Oh, and for a good chuckle here are some "Out Takes" from our Christmas Card picture session!!! The final pick will be in a mailbox near you soon, or for those of you far away I'll post it in our Christmas album!


| View Show | Create Your Own

New Pictures!

I totally forgot to upload pictures from October and November...

The albums are ready to view!!

VIEW PICS!

Enjoy!

P.S.: For those who cannot yet comment I am sorry! I have contaced Blogger again about the issue. I hope it resolves with time.

13 Weeks, 2 Days...

From Baby-Gaga:

Fetal development in pregnancy week 13:

This is your final week in the first trimester and your little weed continues to grow and grow and grow. Of the three trimesters, this one has been the most important for your little one’s development. He or she now weighs about 2.5 ounces and is roughly 3.5” in length. Little hairs, known as lanugo, will start to cover their body this week, as their sense of taste and smell are further refined. Their cozy little amniotic sac is also increasing in size and mass, as it continues to fill with more fluid.

I am feeling much less tired! WOO HOO! I am also less nauseous too which is WONDERFUL. I am showing quite a bit and had to put most of my regular clothing away! I am looking forward to my next MFM (Maternal Fetal Medicine) visit on 12/14.

I swear I feel the little bugger kicking me already -- but it's hard to say for sure. I know I felt Jack move for the first time in my 14th week...so it wouldn't be totally out of the question! Cool!!

Testing Comments...

We've been having some commenting issues -- and I am hoping it's resolved. Please take a moment to comment to this thread so I can test it out. If you are unable to comment please send an e-mail to ang_wilhelm@hotmail.com and describe the issue.

Thanks for your help!!!

PS -- an overdue update is coming soon!

Neurology 101

We saw Jack's neurologist last week to discuss the MRI he had done at the end of October. We discussed the different areas of Jack's brain that were affected by his grade 4 bleed. I really like our new neuro. He was drawing diagrams, breaking out his full color pictures of the human brain and very interested in answering my questions.

First question (and the main reason for the MRI) was to take a look at Jack's Corpus Callosum. As explained before, Jack was suspected to have Complete Agenesis of the Corpus Callosum (meaning the structure that connects the two hemispheres of the brain is missing). However, the MRI reveled a different finding. Jack's Corpus Callosum is formed normally in the front (anterior) and is thin (hypoplastic) in the back part (posterior.) So, this changes things on paper but doesn't really affect us in any other way. So a new diagnosis would be Hypoplasia of the Posterior Corpus Callosum. This was most likely due to the trauma of being born at 25 weeks.

We discussed his PVL (damage due to grade 4 bleed), ventricles, and other areas as well. There isn't anything new or changing and I didn't see or learn anything I haven't before. I appreciated the time he took to answer my questions. Not all doctors are willing to do this.

We talked about Jack's spasticity. He disagrees with the use of Botox in several locations at once. I repect his opinion, but we are still going forward with the injections at CHOP in February. We discussed surgical options like the SDR or the baclofen pump. Both are neurosurgery and luckily we are VERY familiar with our neurosurgeon. This was just a discussion -- we are in no way ready to put Jack through major surgery at this time. We will keep our minds open and continue to ask and discuss everything with our specialists.

Jack has an EEG scheduled for December 7th. If there are any willing participants I sure could use a hand at this appointment! These tests bother Jack so much and he needs restrained. I am hoping daddy can come with us especially because I do have to watch how much I do physically. Jack's medication levels look good so we did not increase his Tegretol at this time. He's also been seizure free so we're doing well at the moment. The neuro told me to call about 3 days after the EEG to discuss the findings. At this time we will increase meds if indicated on the EEG or we will wait until we have our 4 month follow up.

Yesterday I took Jack to get casted for a new pair of DAFO braces. I could not believe how BIG the casts looked!!! Jack picked dinosaurs...again....but this time I chose green padding and strapping instead of blue. He was also measured for a hand brace as well. Those only come in gray...we should be picking everything up in about two weeks.

This afternoon we have our 6 week follow up with the eye doctor. 6 weeks ago the doctor decided to give Jack a break from his glasses to avoid over-correcting his eye muscles because they were in a pretty good position at the time. I feel Jack will be in glasses again perhaps just not as strong of a Rx.

Is everyone ready for Thanksgiving? We are celebrating at home, just the three of us. Then we may go visiting or have visitors...it's all fine with me! I am totally flexible.

11 Weeks, 1 Day

Maternal Fetal Medicine

I met with Dr. B. today for what was a very informative meeting. I really like his manner of speaking. He has a very difficult job, one that I would not want, but am sure glad we are blessed with people like him on this planet.

We discussed a relatively new type of therapy for preterm labor. It's called 17-P. When he started talking about the injection, I became excited and hopeful. There were studies showing a decrease in preterm labor and delivery with 17-P injection therapy. But I knew there would be the other side of the coin. I listened carefully and then learned that the FDA has yet to approve 17-P. This blurb from Wikipedia explains and sums up the risks involved.

The application of 17OHP has been shown to be useful to delay premature labor in pregnancy.

The use of 17-hydroxyprogesterone caproate in pregnancy to prevent preterm birth is not recommended without further study according to two authorities.

A 2006 Cochrane Review concluded "...important maternal and infant outcomes have been poorly reported to date... information regarding the potential harms of progesterone therapy to prevent preterm birth is limited" There was a similar conclusion from a review by Marc Keirse. Three clinical studies of 250mg/week of i.m. 17-hydroxyprogesterone caproate have all shown a trend for an increase in pregnancy loss due to miscarriage compared to placebo.

A meta-analysis by Keirse showed a trend for an increase in miscarriage with 17-hydroxyprogesterone caproate compared to placebo.

There has also been a study in rhesus monkeys where all rhesus fetuses exposed to 1 and 10 times the human dose equivalent of 17-hydroxyprogesterone caproate died in utero. Currently (2006), 17-hydroxyprogesterone caproate is a category D progestin according to the FDA (evidence of fetal harm). There is speculation that the castor oil in the 17-hydroxyprogesterone caproate formulation may not be beneficial for pregnancy.

So, while it's wonderful to know we're on the brink of helping prevent preterm labor and delivery, I am not ready at this time to deal with the risks of 17-P.

We discussed his opinion of my chances of another preterm delivery and he put me at 16-23% based on my history and medical records. This is good news because I truly thought the chances were much, much higher.

We discussed stress management, both physically and mentally. This is something we've been working on at home for the last few months. One small example of something we can control is having Jason take the dirty laundry downstairs. That saves me strain of carrying the HUGE, OVERFLOWING basket...also, Jack is taking the bus to school now which cuts out a lot of carrying and lifting...although I do still carry him on the bus and into his seat. We talked about lifting properly and not bearing down or straining when lifting...rather, use my legs. I am sure I could even ask Jack's physical therapist on some ways to help ease the strain while lifting and carrying our ever growing little man! As for the mental stress I am taking it as easy as possible. Stress is NOT good for the baby. In fact, stress hormones are directly related to premature labor! I am trying really hard to relax.

I go back in 4 weeks' time which by then I will be 15 weeks pregnant! We will do the quad screening (genetics) at this time and also an ultrasound.

We will start measuring my cervix and tracking any changes at 18 weeks. I believe he mentioned this would be done weekly for several weeks.

We discussed the need for a repeat c-section due to the fact that Jack was taken via a classical incision which an up and down cut on the uterus. This is less stable and can lead to uterine rupture if the pregnancy goes all the way to 40 weeks. This could be fatal for me and the baby. So we'll do a fetal lung maturity test beginning at 37 weeks and as soon as the lungs are ready we'll schedule the section.

I really feel I am getting good care. It helps to ease my mind and I am doing a good job of enjoying being pregnant! We are very excited and happy. And YES as soon as they can tell I WILL know what we're having!!!!

9 Weeks Old Today!

From baby-gaga.com :

Fetal development in pregnancy week 9:

Voila! Your amazing growing baby has now been accepted into to the fetus-club, a very exclusive and exiting new stage in their prenatal development. Basically, this means the little sweet pea has graduated from swimming embryo creature to a recognizable human being! This week in particular, the irises of their little eyes can function, but (frustratingly for them?) their eyelids remain fused shut for a while yet. The external ears are formed, and their inner ears are now filled with fluid—so your little one actually has started to develop their sense of balance. Your baby's little swimmer legs are still relatively short, although other developments are going forward at a nice pace: their kidney is actually functioning now, which means they’ve started urinating.

Photo Courtesy of brillbaby.com

I feel HUGE already! I've been wearing elastic waiste pants and maternity tops already. I met with a nurse at HMC last week. She was very nice and informative. I had labs done as well. I will be a high risk patient at Maternal Fetal Medicince and will be monitored very closely.

Next week (at 10 weeks) I meet with Dr. T. at HMC. This will be my last appointment before I move over to MFM. The nurse said there would most likely be a quick bedside ultrasound done at this visit! Oh, I hope so...we love our pictures in this family! LOL

I am under the weather a bit and have an appointment with my family doctor tomorrow morning. I believe I caught whatever virus Jack has at the moment. He saw his dr. yesterday and found out he has an ear infection! Poor guy.

Well, must go get Jack ready for school!