Surgery Went VERY Well!

Jack's eye muscle surgery went very well! He's doing great!

We arrived at the hospital around 8:00 am on Wednesday morning. The check in process was smooth and Jack got a little hospital bracelet. We went up to the second floor south operating room waiting area and, well, waited. We got called back to a small area around 11:00 am where they checked his vitals and asked us his medical history. We spoke to the ansesthesiologist and the doctor. Jack was such a good boy all morning. He waited patiently and didn't fuss at all when they started examining him. We dressed him in the sleepy tiger hospital gown and then he decided to take a short nap while we waited for his turn in the OR.

They decided to premedicate him with Versed -- which I am assuming is like a "nerve pill" to help with keeping him calm. He had just woken up from his nap and I gave him the meds. It didn't take long for the loopy look to set in! They were ready to wheel him back to the OR and we got to walk with the gernie to the doors. It was very sad leaving Jack!

The operation took just about an hour and a half. Grandam Linda stopped by to keep us company in the waiting room. Daddy and I walked to the lobby for some Starbucks and got a bite to eat as well. Jason went back with Jack first. They only let one parent back at a time and I happened to be out of the room when they came to get us! About 40 minutes later they were moved to a secondary recovery area and we were both allowed to stay back there. Jack looked so small and tired when I saw him. I held him on a rocking chair and asked him to give me 5 -- and he did! He took a few sips of juice and woke up little by little. The nurse removed the IV, and we dressed Jack in his own clothes. We were given discharge instructions and an antiobiotic ointment for his eyes.

When we got home we gave him a small snack of applesauce and saltine crackers. Basically we all climbed into our bed and didn't leave for the rest of the night! Jack seemed comfortable and not in any pain. We all fell asleep pretty early!

Jack's eyes look really red. When he looks to the side you can see where the incision was made. It's kind of yucky looking, but it doesn't seem to bother him.

Well, he's stirring now -- and I must run! Sorry to cut it short!

Surgery tomorrow!

On Friday Grandma Linda met Jack and I at the UCP to see the eye doctor. They gave Jack an exam and said everything looks good for surgery. Jack was a real trooper and kept us smiling and laughing as he made friends in the waiting area. Thank goodness for Grandma Linda! It made the appointment so much easier. We then went over to the main hospital to the pre-admissions area. We met with a nurse practitioner who took Jack's vitals and brief (ha, ha) medical history. Then we met with the anesthesiologist -- very nice man! He explained the general procedure for anesthesia and feels Jack will do just fine and does not consider him high risk.

A very good side note -- Jack gained 1 lb 3 oz since going on resource!!!!! He's now weighing in at (drum roll please....)

27 lbs, 3 oz!!!!!!!

That was so unexpected!!!!

Oh, and he's 38 inches tall too!!

Anyway Jack will miss the first two weeks of school. I am a little bummed about that, but I know it's to prevent infection. His teacher called on Monday to wish Jack the best for his surgery. She's such a nice lady.

Tomorrow we need to be at the main hospital at 8:20 am. His surgery is scheduled for 9:50 am. Jack is not allowed anything to eat past midnight tonight. He's allowed only 8 oz of clear fluids up until 3 hours before our arrival time. So I am not sure if Jack will end up getting anything, because although he's an early riser that would mean he'd have to wake up and drink something before 5:20 am!

I will keep everyone posted as soon as I can.

Happy Birthday Mommy!

I Swear I Feed the Kid!

LOL! Here's a follow-up to Jack's latest trick...

Knoebel's Grove...

We went to Knoebel's Grove on Saturday with Grandma Linda and Brian. What a fabulous day (even though it did rain on us for a bit). It's the perfect place for a family day! Jack's favorite ride was the Choo Choo Train! I think that's possibly the biggest Jack Riley smile I've ever seen!

We're getting ready for Jack's surgery next week. I am anxious to get it over with! We have our pre-op appointments on Friday. We'll be at HMC all day setting up the surgery.

You can see more pictures from Knoebel's in the

AUGUST ALBUM

I can't believe it's almost September! The summer has gone so quickly. Jack goes back to school soon (and yes I am looking forward to it!!!) I think Jack is excited too. I am sure there will be several new friends to meet.

My buddy Jack

Things have been pretty quiet around here...

Jack is doing well. He's so bright and funny and keeps me on my toes. His newest thing is washing his hands...he cannot get enough! I guess that's what we get for being so germ conscious all those months! He'll even try to trick me into getting his hands washed. He knows after each meal it's time to wash hands. So he'll take a bite, and exlaim "ALL DONE" and point to the sink. Ooooh no, Jack -- mommy's onto you!

He's talking quite a bit. His words aren't perfect, but if you spend enough time with him -- you'll get the point! Some of his new phrases are "GET IT" - "GET BALL" - "ALL DONE" - "NO" - "UP HERE" - "MAMA HELP" - "GO BYE BYE" - along with about 75 other words...he's come so far. I am so proud of him. He likes to repeat and label things right now. If we're in the grocery store and we pick out bananas he'll let me know...he'll shout "NA NA!!!!!" so everyone ELSE knows we're getting bananas too!

Another shopping note: You know those people that sell balls in stores know what they're doing too. Jack's favorite toy is a ball. So those HUGE wire bins that hold balls are simply torture to parents whose children love balls. You can't miss it...you can't turn back...you HAVE to push your cart PAST the ball rack. Sooo poor Jack. "BALL??" "BALL!!!!!" "Yes, Jack -- very good. Those ARE balls." Insert sad little Jack face here. "BAAAAALLL????" "Oh, look, yes. Look at all those balls." We're almost past...and Jack's turned all the way around in the cart. "Ball." "Yes. When we get home we'll play ball." I may be asking for trouble by saying this -- probably jinxing myself...but Jack does not throw tantrums. He's very easy going...he's my BEST buddy. He goes everywhere with me. Even a trip to Wal-Mart is fun! He loves people and won't think anything of tapping someone on the back if they're close enough. He communicates so much with his little face and personality. He charms everyone he meets...this will be good for Jack, but may get him in trouble too!

He's working so hard in therapy right now. He knows he works hard. His occupational therapist is amazing with him! I wish all of you could join one of our sessions. Jack will now willingly use his right hand for things. You can ask him "Give me 5" and he'll offer you a slap on the hand with his left automatically. Then if you point to his right hand and ask, he'll try soooo hard and will give you 5 with that one too! He's learning to pick things up and release with his right hand. I can see how hard it is...I never thought we'd get as far as we are with him using that hand. It's like I get to see small miracles over and over. Every parent should be so lucky!

During physical therapy he's working hard on weight shifting...he tends to not like to have all of his weight on one foot -- so we're doing a lot of activities that require this. Like kicking a ball...stepping on soft rubber stepping stones and putting one foot up on a step. Our PT is also working with Jack and standing independently. Right now he's getting very good at standing with his back against the wall. He's made so much progress in the past few months! We are getting a new walker called the crocodile. You can check it out here: CROCODILE REVERSE WALKER

Jack's surgery is coming up very soon. I am nervous. Just because he's my little boy and I hate to see him go through anything like this. I know he'll be fine. We have several appointments coming up -- our schedule is packed at the end of this month.

He also goes back to school Aug. 28th. We got a little newsletter in the mail. I am sure there will be many new friends for Jack to meet when he goes back. There's an open house and preschool art show at the end of September. I can't wait to see Jack's work on display! I'll be sure to take a lot of pictures.

Well, time to get Jack in the bath tub! Have a great day!

Oh, and anyone on myspace? Wanna be my friend? Feel free to add me!

http://www.myspace.com/angamc

As Time Goes By...

I went to a party on Saturday night. It was a housewarming party for one of my very best friends in the world! Her new house is gorgeous -- I got to see my core group of best friends from high school. We got to reminisce and laugh. The BEST part about them is the laughter. I laugh till I cry -- then laugh some more. This week I've been left with a very sad feeling. I can't believe we're all grown up with jobs, houses, cars, kids. It seems like just yesterday we were getting ready to go to high school, getting ready to graduate...heading off to college...where have the years gone??

It doesn't help that I am one year closer to leaving my 20's. I turn 29 on August 26th. I don't feel that grown up!

*********************
Thanks ladies! I am very happy with where I am, but surprised that so much time has passed.

I am lucky because I do have wonderful friends with whom I am still close. We're just a little older and more seasoned now!

Nancy, you are RIGHT -- I, in no way shape or form would want to be 17 again. Well, maybe I'd take the ability to show off a bikini...LMAO!
*********************

A little redecorating!

I'll let the pictures tell the story!

We’re getting wheels...

Yesterday Grandma Josie and I took Jack to CHOP for an evaluation at the seating clinic. I went with a list of items I wanted to request for Jack. I wanted to request a special needs carseat because although he’ll be tall enough for a booster seat soon, he doesn’t weigh NEARLY enough to sit safely in one. I also wanted an activity/eating seat, and a special needs stroller (a bigger version of an umbrella stroller). He’s simply outgrowing all of the toddler items he uses!

I was a little nervous about driving, since Jason usually drives when we go to CHOP. Grandma Josie arrived bright and early at our house and we left for Philadelphia right at 8:00 am. Our appointment was at 10:00 am, but we hit some yucky traffic and ended up being a half hour late. I called from the car to explain and they we’re very understanding. Jack was such a good boy in the car — he was tickled that Grandma Josie with in the car and then he napped until we got there!

We met with Alan, a physical therapist with the CP Clinic, and Mike a vendor of special needs and medical equipment. They were great! They played with Jack and asked a lot of questions about how Jack gets around and noted how he really wants to be independent. They watched him walk with two hands held (we didn’t have his walker) and they were glad to see him so motivated to walk! We talked about insurance coverage and the rules about what they will pay for and how often they’ll pay for that item. Alan, the PT suggested instead of a stroller, we should see how Jack does in a manual wheelchair. You know at first my heart sank. I really didn’t think we were at the point in Jack’s life that we’d be making this decision. I agreed with everything the PT had to say. Using a wheelchair will NOT be confining for Jack. It will be liberating and he’ll be able to get away without mom’s help!!! Which is exactly what I want!!! I want him to “run” away while we’re in Wal-Mart...I want to have to chase after him! And he wants it too. So in situations where he isn’t able to crawl or use his walker, he’ll use the wheelchair. It’s basically taking place of the stroller — and giving Jack the freedom to move on his own. That’s something a stroller would not provide. While it’s still hard to accept, I know in my heart this is actually a GOOD thing.

We later moved to a room with tons of equipment! They tried Jack in the Britax Carseat which looks soooo comfy and will work with a child up to 105 lbs!




We also got a seat which works like a booster seat, desk, activity chair, etc. It’s nice and comfy and should work for Jack for many years. It basically just provides proper positioning for the best use of both hands, proper alignment of his back and trunk so he’ll be able to concentrate more on things like coloring and puzzles. It’s sort of like his booster seat he uses now, but much bigger.




Then we tried the cutest little wheelchair I’ve ever seen. Jack looked so good in it. It really looks like it was built for him! He didn’t know what to think at first...but when we showed him how to push on the wheel he giggled and moved back and forth a bit. Here is a picture similar to the chair Jack is getting. He sits up nice and tall and really, really looks great in it.




It’s going to take some time for Jack to learn to use his right hand to push the chair and we’re getting what looks like small pegs on the right wheel so he can push with a closed hand. It’ll take practice, but I am sure once Jack gets it, there will be no stopping him!

Okay, some common misconceptions about wheelchairs that I would like to clear up now. This is NOT “giving up.” Jack will still walk as much as he is now. This will only give him MORE independence. He WILL walk — EVERYONE is confident of this fact. He won’t lose any abilities by using a wheelchair. Many, many people with CP use a variety of equipment in daily life. Some walk at home with no equipment, but choose to use their wheelchairs for long distances and use a walker for shorter distances. Some kids with CP choose to use their wheelchairs at amusement parks or other places where tons of walking takes place. Even though it’s difficult to accept such a strong symbol of being disabled, I know this is what’s right for Jack.

The wheelchair is very small so our house will accommodate it nicely! We don’t have many steps going into the house, so we’ll just need a small ramp probably at the back door since that’s the door we use 99% of the time. Jack’s no where near potty training yet, but when the time comes there will be some bathroom modifications needed...and by that time he’ll probably get to the potty by walking.

Please feel free to ask any questions! I asked a lot at the clinic and they were so helpful in helping us understand how everything works. The equipment should be here in about three months. Insurance only pays for a wheelchair every three years. So another reason we didn’t go with the stroller is that’s also considered a wheelchair and then we’d be stuck with it until Jack is 6! This chair has room for growth so it should be exactly what Jack needs for the next few years.

A Father's Heart...

Forty-three years ago, Rick was born without the ability to talk, walk or barely move. "They said, 'Forget Rick,'" remembers his father, Dick. "'Put him in an institution. He's going to be nothing but a vegetable for the rest of his life.' My wife and I cried a little bit but we talked and we said, 'We're going to bring Rick home and bring him up like any other child."




Dick knew deep down that his son was thriving on the inside, and he insisted Rick go to school. He believed with every fiber of his being that his son had something to say—and he was right. At age 12, Dick had a special computer built so that Rick could communicate. What were his first words? Not "mom" or "dad" as his parents expected. "The Boston Bruins were going for the Stanley Cup," Dick remembers. "The very first words he ever said were 'Go, Bruins.'"

Rick, born with the heart of a true athlete, made a request that would change their lives forever—he asked his father to team up for a five-mile charity race. Dick had never run in his life. "We finished the whole five miles coming in next to last," Dick remembers, "but not last. When we came across the finish line, it was the biggest smile you ever saw in your life. Rick wrote on his computer, 'Dad, when I'm running, it feels like my disability disappears.'"
After many local races, Dick and Rick take their new passion even further.

Even though Dick couldn't swim and hadn't been on a bike since he was 6 years old, the two used a running wheelchair and other special equipment and began training to compete in triathlons.

The pure joy Rick experiences during each race drives his father to the finish line again and again. "Rick can't make very many sounds," Dick says with tears in his eyes, "but he does [make a certain sound] a lot when we're out there competing. … You know he's happy and he enjoys himself."

So far Rick and Dick have competed in over 206 triathlons and 64 marathons!




Dick says his son saved his life.

Preparing to run their 23rd Boston marathon, Dick went to see a doctor about a tickle in his throat. An EKG revealed that Dick had suffered a silent heart attack. She informed Dick that he had a severe cholesterol problem and told him that if he weren't in such great athletic condition, he would have died 15 years ago!



"When [Rick] asked me to start pushing him that first race," Dick says, "I was not a runner and I was kind of overweight—maybe becoming a couch potato. He's got me in the best shape of my life and I just love to be out there competing with Rick. … Rick is a fighter and he never gives up. To me, he's the athlete and I'm just out there loaning him my arms and legs so that he can compete."

What does Rick want people to know?





Rick is a graduate from Boston University with a degree in special education, and he even lives on his own. Through a special computer he is able to communicate his thoughts.

"Until my dad agreed to run that first race, I had no chance," Rick says through his computer. "My dad is my everything. He has made my dreams come true. To steal a line from a song, my dad is the 'wind beneath my wings.'"


Video of The Father/Son Team

Surgery in 6 Weeks...

I hope everyone had a wonderful 4th of July! We spent it with the Wilhelms in Wildwood, NJ. I never wanted to leave! We had a great time. Jack surprised us by eating anything and everything in sight! He was so good the entire time. I am not sure he wanted to come home either!

Check out the

JULY ALBUM!

for pictures!


Jack had a follow-up exam with his eye doctor this morning. He was pleased with how well the eye patching is working. Jack is now using the "lazy" eye almost as much as his other eye! So he is on his way to developing the use of both eyes together (binocular vision) which is very important in life.

The somewhat expected news is Jack will need surgery to correct his eye muscles in his eyes. The patching is not effective in correcting this -- so it will be surgically corrected on August 30...just about 6 weeks away. He needs surgery on both eyes.

Eye muscle repair is surgery to align eyes or correct eye muscle abnormality.

Description

The surgery is most commonly done on children, but is also performed on adults with similar problems.

While the child is under general anesthesia (asleep and pain-free), a small incision is made in the tissue between the eye and eyelid. One or more of the muscles of the eye are strengthened (resected) or weakened (recessed) to allow proper position and help the eye to move correctly. After a few hours of recovery, the child may go home.

Jack will be out of school and therapy for a week due to the risk of infection. He can't go swimming for 4 weeks following surgery either (so we better get all of our swimming in NOW -- lol). He needs to avoid rubbing his eyes and we'll have to put a cream in his eyes 4 times a day.

I would love to hear from anyone else who's child has been through a similar surgery. I am not sure what to expect.

We have several pre-op and post-op appointments scheduled. If the surgery isn't a success, it may need repeated within 6 weeks' time.

Please keep Jack in your prayers. I will update everyone with any new information.

Have a great week!

Edited to add:

Okay, so I found a good article explaining Esotropia (the medical term for crossed eyes).

I thought this was a great way of explaining the patching vs. surgery.

Treatment of congenital esotropia usually requires eye muscle surgery. Before surgery is performed, other factors must be considered. If amblyopia has developed in one eye, this poor vision must be treated right away. This is accomplished by patching the better eye to force the brain to use the eye with poorer vision. Though this will not correct the eye crossing, it will equalize the vision which improves the prognosis for a successful outcome from surgery. The presence of farsightedness must also be detected prior to an operation. Though this is an uncommon cause of esotropia in this young age group, glasses must be tried when there is significant farsightedness present as glasses, alone, may diminish the eye crossing. (See Accommodative Esotropia)

Children do not outgrow congenital esotropia. Surgical correction is usually recommended between six and fourteen months of age. The reasons for correction go beyond the obvious drastic improvement in the child's appearance. When the eyes are misaligned in childhood, binocular vision, or the ability of the brain to use the two eyes together, does not develop. Early alignment of the eyes allows for the development of brain to eye communication which results in enhanced depth perception, fine motor skills, and the best opportunity to maintain good eye alignment throughout life. Even after successful surgery, close follow-up is necessary to detect associated eye problems. Vertical misalignments of the eye, especially when looking to the side, recurrent eye crossing and amblyopia may occur several months or years later.

To read more here’s the link:

ESOTROPIA

ARRRRGGHH!!

I temporarily, royally messed up Jack's Blog!!! I was in total panic mode. The only thing I could not recover were my links on the right hand side, but those are easy to add!

Thank goodness everything's working again -- I would have stayed up all night trying to fix it! So if anyone caught my BIG oops -- sorry! We're up and running again!

Sneak Preview!

Take a look and let me know what you think?

JACK'S NEW VIDEO PAGE

Video Poll...

***Thanks everyone for voting...I have decided to do a video album that works a lot like the photo albums! I am getting rid of the poll now :) ***


Please take a moment to vote in the Video Poll over on the right hand side of the screen. If you can't view the videos please comment here to let me know which ones aren't working!

(You will need Quicktime installed to view the videos)


View Jack's Videos


THANK YOU!!!

Jack's Medical Information

I’ve been wanting to do this for quite some time...for those interested in the medical side of things.

We currently see a developmental pediatrician, neurologist, neurosurgeon, orthopedic surgeon, Dr. of physical medicine, peds ophthalmologist, feeding clinic, cerebral palsy clinic, physical therapist, speech therapist, occupational therapist, and vision therapist.

Jack wears bilateral DAFO’s, a joe cool splint, an eye patch, a resting hand splint, and knee immobilizers. Just not all at once...LOL! He uses a reverse Kaye walker and is becoming independent with it. He is still learning how to get himself into the walker.

Jack has what’s called spastic tone and low tone. He also has dynamic tone as well. His right arm and both legs have a great deal of spasticity — which have lead his doctors to diagnose him with Triplegic Cerebral Palsy. His low tone is apparent in his trunk and his high (spastic) tone is apparent in his legs and right arm. He’s received Botox injections which has helped quite a bit. He’s also taking oral Baclofen which is a muscle relaxant. He’s currently taking 17 mg daily.

To say Jack’s been through a lot is an understatement. When researching to write this post it brought back a lot of memories and I realize just how much he’s had to go through. He’s an amazing kid. If you have any questions at all, please ask!

Ongoing Issues:

Developmental Delay -- A developmental delay occurs when your child has the delayed achievement of one or more of his milestones. This may affect your child's speech and language, his fine and gross motor skills, and/or his personal and social skills. Read more...

Spastic Triplegia Cerebral Palsy -- Cerebral palsy (CP) is a term used to describe a group of disorders effecting body movement and muscle co-ordination. The medical definition of CP is "a non-progressive but not unchanging disorder of movement and/or posture, due to an insult or anomaly of the developing brain." Read more...

Dyspraxia -- People with dyspraxia often find it very difficult to learn physical movements and adapt them to different situations, even when the movements are learnt, they are often executed without confidence or coordination. The motor difficulties experienced by people with dyspraxia are not a result of physical deficits. Dyspraxia, like many developmental disorders, is neurological in origin, that is, it has its basis in the brain. The brain is a network of neural connections that allow us to process the information we receive. Dyspraxia is a result of weak or disorganized connections in the brain, which then translates to trouble with motor coordination. Read more...

Hydrocephalus (VP Shunt) -- Hydrocephalus is a condition in which excess fluid builds up in your brain. The word "hydrocephalus" comes from the roots "hydro" meaning "water" and "cephalus" meaning "head." The fluid that accumulates is cerebrospinal fluid (CSF), a fluid that normally surrounds your brain and spinal cord. In hydrocephalus too much fluid builds up, causing abnormal enlargement of the cavities in the brain (ventricles) that contain CSF. Too much CSF in the ventricles can put increased pressure on the brain, potentially damaging the brain. Read more...

Partial Focal Seizures -- A partial seizure is an episode of abnormal activity in a localized (specific) part of the brain which causes changes in attention, movement, and/or behavior. Read more...

Generalized Seizures -- Generalized tonic-clonic seizures (also called grand mal seizures) are the type of seizure that most people associate with the term "seizure," convulsion, or epilepsy . They may occur in people of any age, as a single episode or as a repeated, chronic condition (epilepsy). The majority of seizures that do occur as just a single episode are generalized tonic-clonic seizures rather than other types. Read more...

Hypoplasia of the Corups Callosum (Partial Agenensis) -- Agenesis of the corpus callosum (ACC) is a birth defect in which the structure that connects the two hemispheres of the brain (the corpus callosum) is partially or completely absent. Read more...

Cortical Visual Impairment -- Cortical Visual Impairment (CVI) is a temporary or permanent visual impairment caused by the disturbance of the posterior visual pathways and/or the occipital lobes of the brain. The degree of vision impairment can range from severe visual impairment to total blindness. Read more...

Amblyopia/Strabismus -- Strabismus is misalignment of the eyes. One eye may look straight ahead, while the other turns inward, outward, upward or downward. Although the problem appears to be improperly coordinated eye muscles, it is sometimes accompanied by vision loss. Amblyopia is reduced vision in one or both eyes as a consequence of failure to develop normal sight in early childhood. Amblyopia can result from a number of underlying abnormalities, including strabismus and focusing abnormalities. Read more...

Optic Nerve Atrophy -- Optic Nerve Atrophy (ONA) is a permanent visual impairment caused by damage to the optic nerve. The optic nerve functions like a cable carrying information from the eye to be processed by the brain. The optic nerve is comprised of over a million small nerve fibers (axons). When some of these nerve fibers are damaged through disease, the brain doesn't receive complete vision information and sight becomes blurred. Read more...

Apraxia -- Childhood apraxia of speech (CAS, also known as DVD -- developmental verbal dyspraxia, and DAS -- developmental apraxia of speech) is a disorder that is more easily defined by what it is not. It is not a muscle disorder. It is not a cognitive disorder (although it may have some impact on language as well as speech). The problem occurs when the brain tries to tell the muscles what to do -- somehow that message gets scrambled. It's like trying to watch cable t.v. stations without the right descrambler. There is nothing wrong with the t.v. station, and nothing wrong with your set. It's just that your set can't read the signal that the station is sending out. Read more...

Dysarthria -- Dysarthria is a speech disorder that is due to a weakness or incoordination of the speech muscles. Speech is slow, weak, imprecise or uncoordinated. It can affect both children and adults. "Childhood dysarthria" can be congenital or acquired. It is often a symptom of a disease, such as cerebral palsy, Duchenne muscular dystrophy, myotonic dystrophy, Bell palsy. In both adults and children, it can result from head injury. Read more...

Dysphagia -- People with dysphagia have difficulty swallowing and may also experience pain while swallowing. Some people may be completely unable to swallow or may have trouble swallowing liquids, foods, or saliva. Eating then becomes a challenge. Often, dysphagia makes it difficult to take in enough calories and fluids to nourish the body. Read more...

NICU/Neonatal Issues:

Extreme Prematurity/Micro Preemie — Jack was born at 25 weeks gestation (3 and 3/4ths months early), weighing 2 lbs.

Jaundice/Hyperbilirubinemia -- "Hyper" means high; "emia" means in the blood. Hyperbilirubinemia is a high level of bilirubin in the blood. Jaundice is the yellow color to the skin that is often seen in the first few days after birth. The yellow color is due to bilirubin. Read more...

Grade 4 intraventricular hemorrhage (IVH) -- Intraventricular hemorrhage means bleeding into the normal fluid spaces (ventricles) within the brain. IVH is also used to refer to bleeding in areas near the ventricles even if the blood is not within them. Read more...

Periventricular Leukomalacia (PVL) -- "Peri" means near; "ventricular" refers to the ventricles or fluid spaces of the brain, "leukomalacia" is softening of the white matter of the brain. Periventricular leukomalacia is softening of the brain near the ventricles. The softening occurs because brain tissue in this area has died. Read more...

Retinopathy of Prematurity -- Retinopathy of Prematurity (ROP) is an eye disorder affecting premature infants. This disorder was called Retrolental Fibroplasia in the past. ROP affects immature blood vessels of the retina. It occurs weeks after birth. Once development of blood vessels is complete, a child is no longer a candidate for this disorder. Read more...

Patent Ductus Arteriosus -- Patent mean "open". The ductus arteriosus is a blood vessel connecting the main vessel leading to the lungs (pulmonary artery) to the main vessel of the body (aorta). Read more...

Respiratory Distress Syndrome -- Respiratory Distress Syndrome (RDS) is the most common lung disease of premature infants. RDS occurs in babies with incomplete lung development. The more premature the infant, the greater likelihood of RDS. RDS is due to insufficient surfactant in the lungs. Surfactant is a material normally produced by the lung that spreads like a film over the tiny air sacs allowing them to stay open. Open air sacs are essential for oxygen to enter the blood from the lung and for carbon dioxide to be released from the blood into the lung for exhalation. Read more...

Bronchopulmonary Dysplasia-- BPD is a reaction of the premature lung to its disease and to the oxygen and mechanical ventilation that were needed to treat the infants lung disease. Occasionally very premature infants get BPD even if they did not need mechanical ventilation or much extra oxygen after birth. Read more...

Pneumothorax -- where the air is trapped inside the chest between the chest wall and the lung, causing the lung to collapse. Read more...

Apnea and Bradycardia -- Apnea is a pause in breathing that has one or more of the following characteristics: lasts more than 15-20 seconds, is associated with the baby's color changing to pale, purplish or blue, is associated with bradycardia or a slowing of the heart rate. Bradycardia is a slowing of the heart rate, usually to less than 80 beats per minute for a premature baby. Bradycardia often follows apnea or periods of very shallow breathing. Sometimes it is due to a reflex, especially with the placing of a feeding tube or when the baby is trying to have a stool. Read more...

Anemia (requiring many blood transfusions) -- Anemia is having too few red blood cells. Red blood cells carry oxygen to the body. Read more...

Inguinal Hernia (Repaired Surgically) -- An inguinal hernia develops in the groin at the level of the skin crease between the leg and the abdomen. In a baby boy the bowel loop protrudes into the scrotum. An umbilical hernia develops after the cord comes off and is an outpouching where the cord used to be. Hernias are usually not present when the baby is born but develop later. Read more...

Reflux (Reglan and Zantac) -- Normally the muscles of the food pipe propel the food or liquid down to the stomach by a series of squeezes. Once in the stomach, the food or drink is mixed with acid to start digestion. When this mixing occurs, the mucles at the lower end of the esophagus should become tight keeping the food from backing up. In premature infants and some term infants these mucles are not yet fully developed and coordinated. They sometimes relax when they should be squeezing. This allows the liquid to come back up again. Read more...

TPN/NG Tube/Feeding Difficulty -- With TPN, protein, fat, sugar, vitamins and minerals are added to the fluids that the baby receives by vein. Your baby can receive complete nutrition and grow on TPN alone. As your baby tolerates other feedings, the TPN will be decreased. Your baby may be started on tube feedings. A tube is passed through the mouth or the nose into your baby's stomach. Milk is put through the tube. This may be as a constant slow drip, called continuous infusion or drip feeds, or as prescribed amounts given every few hours, called gavage feeding. Either way, the amounts will be very small at first and gradually increase. There is often a transition period between TPN and tube feedings where the amount of nutrition from TPN slowly decreases as the amount from tube feeding increases. Read more...

Weaned from home oxygen 1/8 liter @ 100% and apnea monitor.

A 'Free' Week....

Jack is getting better but still has a lingering cough and runny nose. The school is on vacation this week and I just got off the phone with the Med Center's therapy services. I cleared our calendar for the entire week. I feel torn, but I know this is best for Jack. I want him to fully recover and not end up getting sick again. -- here's to a full recovery and nothing to do this week!

Update on Mr. Jack

Jack's been out of school all week and although his fever's all but gone this afternoon he's still coughing and stuffy. I am not sure at this point it's anything more than a viral cold. So we're not going back to the dr. yet.

Right now he's in his room listening to Macaday Kids 100 Silly Songs and dancing and smiling. So I'd say he's not exactly down and out.

Oh, wow, I spoke TOO SOON. As I was typing this update Jack started wailing...and when I went to him he asked me "uppa" which means pick me up. When I did he felt really warm -- so I gave him some medicine and rocked him a little and off to sleep he went. I changed my mind! I am taking him back to Priority Care when he wakes up. I just want to be on the safe side -- if it turns out to still be a viral thing that's great! But if he does have an infection he needs antibiotics. So I must hop in the shower and get ready to go.

I'll post an update when we get back!

(of all weeks for his pediatrician to be on vacation!!!! ugh...)

UPDATED:

We're back! Jack didn't have anything that jumped out at the Dr. His left ear was red...and his nodes and glands were swollen. He put him on a 5 day antibiotic and also did a strep test. Jack developed a rash on his chest which resembled the strep rash -- so in any case he put him on meds. We'll find out about the strep test tomorrow.

Thanks -- I will keep you posted!

icky sicky...

On Monday Jack got sent hom from school with a fever. That was a terrible phone call to get! I saw the caller ID and nearly had a heart attack -- then when they said Jack was sleeping and he had a fever of 101 (under the arm) I was practially in my car already! The teachers really took action though so I am glad. When I went to pick him up he looked AWFUL! I called the pediatrician's office and she was on vacation so we went over to Priority Care.

The clinic was empty - -thank goodness! The nurse and Dr. were sooo nice and they appreciated the fact that I brought a print out of his medical history (and they seemed confused too almost like that never happened to them before...)

Jack looked clear (chest, nose, ears and throat) , but it was only the first few hours of the fever.

He's had fevers before but he was so very lethargic when I picked him up from school that it worried me. He was out of it and at one point scared me because he seemed unresponsive...but he "came to" and looked very annoyed that I was yelling in his face! Then when we got home and it read 102.7 I knew we were going SOMEWHERE. lol.

They gave him a dose of Motrin at the clinic and said to call the ped on call if he's still so down and out after the meds kick in...and of course to keep him hydrated. He's been sleeping on and off since Monday.

I did give him a dose of Tylenol after the Motrin and he's hanging out at 100 now...he slept most of the afternoon and ate some peanut butter crackers and drank warm sprite (it was one of the few times I saw his face light up when I told him he could have SODA! ) I know it's not the best for hydration but I knew he would drink it and he's since had a nice wet diaper

He started coughing at dinner last night -- I am thinking it's heading that way ...

There were two other kiddos sleeping at Jack's school (all three of them nodded off during story time. I am wondering what on earth the teacher was reading today )i...so I am sure it's something that's going around at school. I do plan on asking when I call today!

He was up most of the night coughing some and with a very high temp...after alternating Motrin and Tylenol it came down but this morning it went up to 103.8! I gave him meds and a luke warm bath. Each time the meds kick in it's coming down to about 100-101. If he's still coughing/runny nose tomorrow we'll be heading back in to make sure he doesn't need an antibiotic.

we BOTH took a long nap this afternoon...and I've just ordered pizza for dinner. I am one tired mommy today.

Thanks for thinking of us -- I will keep you posted!

We had another long night -- but his temp was down!!! It hasn't gone past 99 yet this morning either. He has a runny nose with post nasal coughing....but he's sooo much more himself today!! He's even chomping on some lucky charms as I type this

Jack's "Report Card"

I must say I am pleased with how well Jack is doing in school!

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

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

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

Follow one step directions -- NC

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

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

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

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

And, drum roll please...

Use walker in classroom independently -- I

Overall looking at Jack's goals I am really pleased with his progress so far. He's only been in since March! His goals are for the entire year -- so it will be interesting to see how he progresses in the next three quarters!

A Bedtime Story

There once was a boy named Jack...

His Mommy and Daddy decided he was ready for a BIG BOY bed!

So Mommy and Jack went to K-Mart...

And when they got home they put Daddy to work!







Daddy did a great job!






At first Jack said he didn't want to be a big boy!!






I don't WANNA go in my new bed!!!!!






Now wait....this isn't so bad!






Yes, in fact, I think I like it!






GOOD BYE baby bed!!





Hmmm, am I really ready?






Where's Jack??






THERE HE IS!
A BIG BOY IN HIS BIG BOY BED!!!!!