Great Company

If you need to buy anything at all for a little one, please check out www.onestepahead.com. We have bought many of their products which we have found to be of very good quality. AND they have fantastic customer service. For instance, I just called them and asked about buying a part for Jack's travel tray that we broke by mishandling. Did you catch me saying we broke it? I told the customer service people at One Step Ahead that we broke it and that I wanted to see if I could order the part that broke so we could use our table again because we love it so much. We bought this thing several months ago and we broke it by mishandling it so I had no expectation of any type of warranty and would have even been okay with it if they had told me that I would just have to buy a whole new one. Instead, they looked up my order in the computer and they are shipping a brand new travel tray and footrest out to us this afternoon completely free of charge. Isn't that great? Please check out th!
eir website and consider buying some of their products. Great companies like this need to be supported.

Sent from my Palm Treo

Jack and the three Cousins and Dinnertime with the Smiths

Sunday afternoon some of Jack's cousins came by and we went to the pool. It's hard to take pictures with four brave munchkins jumping in and out of the pool and swimming around. We managed to get a few shots, though.

First up, we have the four amigos...Jeanie, Anja, Jack*, and McCahill.

Here are Anja, Jeanie, and Jack* swimming over to the side to get ready for the group shot.

This is one of the many times that "Fearless Jeanie" jumped into the pool by herself.

Anja took swimming lessons earlier this year so she was not afraid of the water either.

Swimming is good exercise. Jack decided to take a breather with a drink and a snack poolside.

Mealtimes are often "mini-therapy" sessions at the Smith household. We've been working on self-feeding tasks. Jack is very good at taking bites out of crispy things like crackers and rice cakes. Tonight, David decided to try to help Jack get over his texture aversion by spreading a thin layer of spaghetti on his club crackers. What a smart Daddy! It worked. Jack did not try to wipe the spaghetti off his hands like he is wont to do and he took nice little bites of spaghetti and cracker.

*Jack is actually not swimming unassisted in these photos. I just edited myself out of the pictures for a better picture.

Jack and I have both managed to get a summer cold. It's really running me down but Jack seems to be affected only at night when he sleeps. Thank God for medication, suction bulbs, and Bipap machines. Keep those prayers coming. We always need them!

Where did the little guy go?

Just look at these pictures! It's hard to believe that these are all the same little person. You would not look at Jack today and think that he would love to lie in a laundry basket with Mommy's fleece blanket stuffed around him.

Been There, Done That, This Time We Bought T-shirts

We're home from Texas. Jack had a MRI Monday morning. Fortunately, the MRI showed that the ventriculostomy which was done last month is still open. The neuroradiologist said the ventricle size remains unchanged. Jack's neurosurgeon, Dr. Price, thought that the third ventricle looked a bit smaller to her. She measured Jack's head that morning at 58 cm which is a 1/2 cm less than the measurement we had gotten at home. That afternoon, we saw Dr. Fearon and he measured Jack's head at 57 1/2 cm. They both used good measuring technique just as we did when we measured and we all measured the same area. It makes me wonder if Jack's head possibly fluctuates in size a bit throughout the day. After all, there are times of the day that his soft spots are softer than others. Both Drs. Price and Fearon recommended that we do nothing at all right now. Dr. Fearon told us to tell all Jack's other doctors that he does not want Jack sedated or having any other extensive testing unless absolutely medically necessary for at least the next four months. He wants Jack to have some doctor-free time. Dr. Price wants us to get another MRI in 6 months but we can get that one done here at home unless we have other concerns that need her or Dr. Fearon's attention. Jack still needs the surgery to close the eyelid over his right eye a bit but Dr. Fearon advised us to wait since Jack's eye is not protruding nearly as much as it previously had been. We can also have that done locally if we and the anesthesiologists at our local Children's Hospital can become comfortable with one another.
We arrived at the airport very early this afternoon so we could each buy a souvenir t-shirt. We don't want Dallas feeling the need to call us back so we made sure that Dallas knew that we had something to remember it by.
Thank you all again for all the prayers and well wishes. They really mean alot to us.

Back to TX but First some pictures

Jack really loves the pool. You can see that he is not afraid to put his head or any other part of him in the water. The final picture is Jack having a snack. Usually the pocket bibs are great for catching food that he drops. In this case, it worked as both a catcher and a dish. :)

Jack’s head is still growing and the neurosurgeons are worried about his head so we got the call yesterday afternoon that we need to return to Dallas next week for possibly more surgery. He will have a MRI Monday morning and we will know more after that.

The Apple of My Eye, His Eye, and an Apple Pie

Jack continues to amaze us. We are fortunate enough to live in a swim and tennis community in the southern United States where the summer sun does not even begin to set until after 7 pm. Jack absolutely loves the water. After work this evening, while supper cooked in the crock pot, we headed out to the pool. After about an hour of just generally splashing around, we decided to see if we could get Jack to float on his back (wearing his float suit). It took a few tries to get him to relax. Then suddenly he was floating for a few seconds at a time with no hands on him or under him. The awesome thing about this is that is exactly what he needs to learn to do in case he ever falls or jumps into the water by himself. I think if we work on it we can get him to jump in the pool and turn over on his back all by himself before the pools close for the season in October. (Yeah, southern summer lasts forever once it comes.)
As dusk approached and all the other swimmers headed home to get supper started or to get ready to go to school in the morning, we removed Jack's float suit and let him play on the steps. This is pretty much the only time of day he would get those steps all to himself. He crawled and floated around the steps for about 15 minutes. He was actively putting his hands on the steps and allowing his lower body to float up as he lowered his face in the water and breathed out blowing little tiny bubbles in the water. Once he actually lost his handhold on the step and he was completely floating in the water. Did he panic? Absolutely not. He just breathed out and regained his hand hold and lifted himself back out of the water. Remember when I said, "he thinks he can swim"? Maybe he thinks that because he just about can.
Okay so before everybody who loves and cares for Baby Jack or is concerned about children and water safety in general begins commenting on how we should be very careful in the water, please know that Jack was extremely closely supervised during all pool activity and while we may think he is a natural we are not planning to allow independent pool time anytime soon. Now, feel better?

Jack saw his ophthalmologist today. He slept fitfully last night so he was really not in the mood for an eye exam this morning. Still he was a little trooper and made it through the exam with a minimal amount of squirming and fussing. Dr. Cogen did not see any signs of increased pressure or at least he did not tell us of any thing like that. He pretty much said that that left eye has always stuck out a little more than the right and Jack has grown and the eye is just kind of more prominent because his orbital bones have not kept up with his growth. We will see an occuloplastic surgeon on Wednesday to talk about what we can do to make sure that Jack's eyes don't become overly dried out by their near constant exposure to air. Dr. Cogen was more worried about some dryness and irritation to the lower portion of Jack's eye than anything else. So that was basically good news.

We have been working on getting Jack to take bites out of pieces of food rather than us cutting everything to bite size. Well it's going a little slow. We've had some success with crackers and rice cakes. Today, we treated him to a hamburger for lunch and I tried cutting it up into thin strips hoping he'd take bites since he could not shove each strip into his mouth or so I thought. He sure can get a lot of food in that little mouth all at one time. Anyway he had to have help biting off the strips of hamburger. But look what he did when given an apple pie!







Looks like he knows how to take bites after all.

Hope you've enjoyed this little update. I know that you've all been praying for Jack and I want you to see how happy he is and the wonders that God continues to work through him.

Fun with Cousins

Hey everybody, I am sorry that I have not mentioned Jack's eye again since the worried about it popping out comments. His eye is really looking a lot less swollen. He has an appointment with his ophthalmologist tomorrow so hopefully he'll be able to give us some answers.

We invited Jack's cousins over to swim today. As you can see from the pictures below, he was very excited to see them. He loves his cousins. Jeanie and McCahill are two of his most favorite people in the world. Look at the way he just about tackled Jeanie with this kiss and hug.
Did I mention that he was happy?

Pictures--some old, some new

Full update

Sorry everyone. I have been very busy with work and just have not had the chance to update. I'm replacing my earlier note from today with the more full update you were all looking for. Hey, it's not easy being the press agent for Jack along with my other duties. :)
Jack's MRI showed that he had the "right" anatomy to attempt a third ventriculostomy so that's what Dr. Sacco did. The procedure went very smoothly apparently. Dr. Sacco came out telling us that he was very happy with how things went and we should be called back soon to see Jack. A short time later the recovery room nurse called into the family waiting room and asked me to come in and set up Jack's Bipap. They were maintaining his airway with a chin thrust, frequently trying to arouse him to breathe, and keeping his oxygen "wide open" and still he was dropping his oxygen levels pretty low. We put the Bipap on his maximum settings and they kept the oxygen wide open but we just couldn't keep his oxygen levels up until after he had a couple of respiratory treatments and some Narcan to counteract the effects of the anesthesia. Slowly but surely his oxygen levels stabilized and they transferred us to a room. He slept all afternoon and woke up just in time for supper. So, of course, he stayed up a good bit of the night. The every 4 hour neurochecks were not all that bad since he was pretty much awake anyway. He did not appear to have much pain after the surgery. Dr. Sacco said that the surgery is not a painful one. But Jack is getting more teeth in so we were giving him Tylenol not really knowing if he was having surgical pain or mouth pain.
Jack's teeth appear to be coming in on top of each other. It looks pretty painful.
Dr. Swift who made rounds on Jack's discharge day told us to expect Jack's soft spots to fill back up and then slowly recede. He said that Jack's head should definitely not continue to grow and we should call if we noticed it getting bigger. He also told us to watch out for increased sleepiness and irritability. It took a few days for Jack's balance to return and he was more irritable than usual. But again, the question was is the balance issue just because he was kept in bed while in the hospital and is the irritability caused by the teeth? Either way, his balance and irritability pretty much sorted itself out by this past Tuesday morning.
Jack is walking all over the place and we are still not used to seeing it. He also seems to be playing with sounds a bit more lately. He seems really happy to be home. I think he enjoys the freedom of walking. He still likes to push his push toys but now he does not depend on them. He smiles such great big smiles while he is walking around. Man, is he ever busy busy busy. Naps are more of a challenge with the recent schedule flip flops and his new found freedom. Also, bedtime has gotten to be pretty late. We are going to have to work on that. Even super babies need their sleep!
One thing we are worried about is Jack's left eye. It almost popped out the night he had the ventriculostomy and again Wednesday night. Our surgeon wants us to send him a profile and head shot so he can kind of evaluate the eye long distance.
I am sure that I left some stuff out and I'll add pictures later.
Thanks again for all the prayers.