Simon's Spot: My Journal

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Wednesday, April 22, 2009

I had my visit with the surgeons today, and they did not have good news. My growing soft spots and continuing speech delay are red flag indicators of possible brain pressure. They cannot definitely say if I have pressure without doing a probe, but these are some good signs. In looking at the shape of my head, the front of my skull is not giving my brain enough room. So, they will repeat the surgery that I had when I was 6 months old. My skull will be remodeled so as to give me more space, and then they will do the split bone graft at the same time. Think of it as 2 for the price of 1! My eye orbits look good and should not need work this time around. Since I am big and strong, I probably won't need blood, but we will be ready with 2 units directly donated. The staples will be in my head for about 2 weeks, and the bone should all grow together within 3 months. The plates and screws will likely take a year to fully dissolve. Hopefully, this will be my last skull surgery, but we cannot tell for sure until I have grown again.

Monday, April 6, 2009

I had a CT scan today. Mommy noticed that the soft spot on the right side of my head seems to be getting bigger. I have 2 spots, one by each temple. They used to be similar in size, but now the one on the right has seemingly doubled. The CT scan shows the defects that Mommy has felt, and now we will meet with the surgeons on April 22 to get their interpretation of the matter. If they determine that my brain is under pressure, then I will have another CVR surgery. If not, then I will have a split bone graft. (Basically, they take a wafer of bone off the back of my skull, split it like an Oreo cookie, and then affix the pieces over the soft spots with absorbable plates and screws.) I had quite a bit of fun exploring the machine and bed and pushing buttons, but I did not want to get on the bed for the scan. So, they ended up giving me some gas to sleep. Mommy had to wait about 30 minutes, and then she got to be with me when I awoke. We got a disk with the pics from this scan and the one done right before the surgery.

Monday, January 12, 2009

I had my 4-year-old well visit and shots today. Almost everything looks good. I have been growing steadily, and I could read the vision chart satisfactorily. The only recommendation was that I be evaluated again for speech. I do quite a bit of parroting, and I have not grasped pronouns yet. The doc says that those are things common for a 3-year-old but not a 4-year-old. Mommy and Daddy have been watching my progress and are not too worried right now. They are holding onto the script but not making calls about it.

Wednesday, June 25, 2008

I had my second set of bilateral ear tubes put in today. The old ones fell out, as they were supposed to. We put the new set in so that fluid will not build up again. They gave me the goofy juice before the surgery to calm me down. I was definitely drunk, but I was not calm. Mommy had to keep me from falling off the bed, and I was adamant about keeping my shoes on. The assistant kept wanting my shoes off, but I did a good job of throwing a tantrum about it. The doc said that they could just take the shoes off in the OR after getting me to sleep. We waited for a long time in pre-op, and then the surgery went fast. They sent us home right after it. Of course, I did fine. I was wound up, bouncing off the walls for the rest of the day.

By the way, I am now fully potty trained.

Wednesday, April 9, 2008

I have been steadily growing and talking more, but I have not made any leaps in development that reminded Mommy to write. I am almost potty trained completely. I know lots of songs and can identify some letters of the alphabet. I can count to 12, and I know lots of things about all kinds of stuff. I love to play and run, and trains are my favorite thing. I say some cute and funny things, too. Mickey Mouse is Picky Mouse. When I am mad, I say "Pop It the Chicken!" in my sternest voice. There's more, but it is hard to remember it all right now.

Mommy took me to the doctor today. I was not happy when I pulled into the parking lot. The doctor's building is next to the hospital where I stayed for Rotavirus. Yikes! I was good walking in and also getting my ears checked. I hated the hearing test (tympanometry) and fought good and hard. Mommy cannot hold me down very well now that I am so big. According to my ENT today, I will probably need a new set of ear tubes. My old ones fell out like they are supposed to, but I still have fluid in there. Since I also keep a stuffy nose, they might take my adenoids out too. Maybe this will help me sleep better at night. They were going to do a sleep study last week, but Mommy and Daddy decided to wait. I am not sleep walking like I used to, and I have not had the night terrors. (For a while, I would either scream and run through the house in my sleep or I would get up and give my cousin Ethan tours of the house in my sleep.) I still like to go to their bed in the middle of the night and snuggle into their warm bodies. I sleep lots of hours, but I wake up tired. Mommy wonders if I have sleep apnea.

Wednesday, July 18, 2007

I am speaking in full sentences occasionally. I still use fragments most of the time, with my favorite word being "Ooookay!"

I love horses, trains, planes, Superman, basketball, Muppets, Finding Nemo, and Cars.

Wednesday, May 23, 2007

My teachers told Daddy today that I am sweet on Ruby. I bring her toys and put them away. Also, I get very excited when I see a truck or a daddy that looks like hers. Mommy and Daddy figured it out already but still think it is cute.

Monday, May 21, 2007

Dr. Bolanos checked out my tummy today and said that I am all better. I even gained back 2 pounds.

Wednesday, May 16, 2007

I just came home today after being in the hospital. I was admitted Monday night because I was dehydrated from a tummy sickness. The tests showed Rotavirus. They kept me hooked up to fluids and made sure that I was eating before I left. I get the BRAT diet until my tummy is all better. I lost at least 5 pounds.

Saturday, April 14, 2007

I have been going to the potty at school, but I have not been as successful at home. Finally, I peed in the toilet and not on the floor today. I am doing a very good job of telling Mommy and Daddy when I have used the bathroom in my diaper, but we are working on getting me to say something in advance.

Sunday, March 25, 2007

Tonight, I slept in my toddler bed for the first time. It is a giant red firetruck. Mommy and Daddy bought it a week ago, but it was missing half the parts. They had to wait for the parts to be delivered, and then we went away for Uncle Kevin's wedding. It is going to take me a while to get used to my newfound freedom at night.

Wednesday, March 21, 2007

Today was a big day. First, Mommy met with Kate (the EI lady for my speech), and they determined that I am making great progress. In fact, I am at a point where Kate really cannot offer much more help. I am at a level appropriate for my age, and I am learning more and more every day. So, my speech therapy case is closed. Then, when Mommy picked me up from daycare, they proudly talked about me going potty. I actually peed, just like the big boys!

Thursday, March 15, 2007

I broke my crib today. Click here to see the damage. It looks like Mommy and Daddy are going to have to find new sleeping arrangements soon.

Monday, March 5, 2007

We had another cranio clinic today. I still have 2 soft spots in my head, one by each temple. They are each about the size of a fingertip. My neurosurgeon is not too concerned since they are so small and are in an okay location (not on top by my sagittal sinus). There is a small risk of me falling on something just right and getting injured, but he has never personally seen such an injury. My craniofacial surgeon would like to remove the scalp cyst that has formed above my right ear, but it is not an urgent matter. Mommy primarily wanted to know what safety risks the soft spots present. They did say that I cannot play organized contact sports such as football or boxing as long as those spots are present. (The defects will not be closing on their own at this point.) Now, surgery is an option. They will take bone chips from my skull and fill in the holes, placing an absorbable plate on each one. I would go home the next day. They want to do the surgery sooner rather than later as I will be more forgiving of all of it at my younger age. Mommy and Daddy do not know what to do. They cannot afford another surgery, and they are scared of putting me through another procedure. On the other hand, Mommy does not want to be the forever worried mom. She will not be able to stop me from playing roughly with my friends, especially since I am all boy. We will keep everyone posted on whatever is decided.

Wednesday, February 7, 2007

We had the follow-up for my ear tubes and hearing test, and everything looks good.

Sunday, February 4, 2007

Mommy is anxiously waiting for the appointment with the ENT this week where they will go over my hearing test results. We had the hearing test to rule out hearing problems since I babble so much. She does not understand why they cannot just tell her over the phone. It probably has to do with privacy laws, but that still does not keep Mommy from worrying. We will post an update once we know.

Wednesday, January 31, 2007

My Early Intervention Specialist, Kate, has been meeting with us for a few weeks now. She has been giving Mommy and Daddy lots of tips to help me with my speech. Now that she has started coming around, I am learning so much! I now have about 30 words that I consistently use, and I am understanding what other people are saying. After Kate visited my daycare, she decided that there was nothing she could suggest that they are not already doing. Since I am making so much progress, we are going to reduce Kate's visits from once a week to once a month. We will be officially changing my IFSP (Individualized Family Service Plan). Kate will still be available by phone if any major changes occur. I have not reached the goal of 50 words, and we are still working on my give-and-take abilities in conversation. It seems that I am following a similar pattern to other cranio kids in that things are coming 6 months later than they do for most other kids. Mommy worries too much and forgets that it will all come when I am ready.

Friday, December 15, 2006

I had a full assessment done through the Early Steps program today. Mommy met with a representative from USF last week, and she went over all kinds of questions. Then, today, we went to Lakeland to have 2 therapists and the representative assess my skills. They asked me about anything and everything, and they watched me as I played. I really did not want to play with these new people at first, so I stuck close to Mommy. After a while, I realized that all the toys were pretty fun. They played with me and had me do all kinds of things. They told Mommy that my motor skills are fine. They said that I have excellent social skills and a great sense of humor. Playing peek-a-boo in the mirror was especially fun, and then I got that man to play with me. They all thought it was pretty funny, too.
As for my speech abilities, they determined that I am a little behind. I qualify for services since for some things I am at the level of a 12-month-old and for other things I am at the level of a 16-month-old. Mommy will talk about it more when the report comes in the mail.
They looked closely at my mouth and asked Mommy a few questions about whether or not I have a cleft palate. They discussed whether my mouth shape might be affecting my speech, and they decided that I am doing fine with using my mouth. My highly arched palate and underbite get attention at each new doctor I see. Dr. Ricalde (my craniofacial surgeon who is also a maxillofacial surgeon) said that my palate is closed but that my mouth definitely needs orthodontics in a few years. Once the therapists heard this, then they were pretty satisfied.
They will be sending an early interventionist out to our house twice a week at first. If we want to, we can start going to an actual speech therapist in a couple of weeks. Right now, everyone’s booked or busy, especially with the holidays. If we like the EI person, then we can stick with her. Hopefully the EI person will come to our house once a week and then go to the daycare once a week. Otherwise, she will come to our house both times each week.
I will keep everyone posted on this new adventure. Hopefully I will soon be able to talk about it!

Saturday, December 2, 2006

Today was my birthday party. I woke up very sick, even throwing up. By the time of the party, I felt fine again. I had Grandpa Chastain, Grandpa Scofield, Grandma Scofield, Uncle Daniel, Uncle Bobby, Aunt Karissa, Aunt Jenny, Kailyn, neighbor Dave, and neighbor Carmen there. We had lots of fun and food. By the third present, I caught on to what to do. Now, I cannot wait for Christmas!

Thursday, November 30, 2006

Mommy and Daddy are trying to convince me not to behave like a dog. When Daddy picked me up from daycare today, one of the other little kids was checking out Daddy's whistle and keys and badge and stuff. Well, the kid referred to MY Daddy as "Daddy" because the teachers tell them that he is my daddy. I was NOT pleased! I ran over, growling and snarling, and pushed the kid out of the way. Since I am so much larger, the poor kid went flying. Fortunately, the kid got up and started laughing. I get pretty jealous if Mommy or Daddy gives attention to any of the other little kids. I am not supposed to act like the dog, even if she is my fur sis. I guess this means that I should quit eating the Milk Bones, too.

Wednesday, November 22, 2006

I had ear tubes put in today. In the past few months, I had an ear infection that lasted through 3 rounds of antibiotics. The ENT found lots of fluid and said that I am probably not hearing people's speech very clearly.

We checked into the hospital by 6:50 a.m. After Mommy did the paperwork, we went upstairs and waited a little while. They called us back to take my vitals and get me changed. I did not sit still enough for the vitals, but we did manage to get that big gown tied on. Mommy and I curled up on the bed and watched Clifford and Arthur and some other characters on the TV. The anesthesiologist came and took me back at 8:45 a.m. She told me that we were going to go look for Clifford down the hall. I got pretty mad when we did not find Clifford. They stuck a mask over my face, and next thing I know I am waking up in a strange room with no Mommy. The surgery only lasted about 10 minutes, but I did not care. I wanted Mommy! After I was fully awake, Mommy came back. We sat in a room for about 30 minutes, with a nurse checking on us regularly. Then, we went home. Mommy and I had breakfast at McDonald's. I ate an entire chicken biscuit meal. While we were at Mickey D's, Grandpa Harry called to tell us that my little cousin Ethan had been born an hour ago.

The doctor's report on my ear tubes was that they found lots of fluid to drain but that the ear tube surgery went very smoothly. I do have thin ear drums, which will probably have my tubes fall out closer to 6 months than a year.

Friday, August 18, 2006

Simon has now made it through his first week of daycare, and he is getting very settled in. On Thursday, the teacher told me that they are having to keep an eye on him as he is pushing one of the little girls. Her name is Cecilia, and she has the dark hair that Simon loves. He goes up and plays with her pigtails and eyes before shoving her in the chest and running. One of these days, Cecilia is going to fight back. (I honestly hope it is soon as he needs to learn a lesson.) On Friday, dropping him off was even harder. He was crying so much when I left, but apparently he calmed down after a little while. He became a little wiser on the playground. When it was time to come in, he did not throw the temper tantrum. Instead, he ran to the far corner and hid. One teacher had to finish rounding up the class while the other one had to chase after Simon. I wonder if any of the other little kids Simon's age do these sorts of things. Somehow, I doubt it. When I picked him up, he was all red and sweaty from playing outside. He drank some of his juice, and he grabbed onto me. Once he sees me, I cannot walk away again without him crying so pitifully. He slept really good last night, going to bed at 7:30 p.m. We are going to try to keep him on schedule on the weekends. Hopefully it works. Well, the little monkey is taking his nap, and I need to help Simon's daddy clean the house.

Thursday, August 17, 2006

After this week, I promise to slow down with the updates. I just thought I would keep you all posted on this initial adjustment.

This morning was the hardest yet. Simon did not want to let go of me. He started playing, but he wanted me to play with him. Once he went across the room and I made a move to leave, he ran after me while crying. I went out the door and listened for a few minutes. His teacher came out and said that he would be all right soon. I got up the strength to leave but thought about him all day.
When I picked him up, he was having a snack of crackers while sitting at the little table and chairs with all the other kids. (They have all their food at these little tables. It is so cute. I am amazed that these teachers can get all these toddlers to sleep on the cots at the same time and eat at the table at the same time. They even help to put the cups in the sink!) After he finished chewing his cracker, he wrapped his little arms around me and held on tight. They changed his diaper before we left, and he was not happy when I walked away from him. I had nearly tripped over another little one, and I had to go distract that child from crying by playing peek-a-boo. Once he and his pal were laughing, I went back to Simon. We went to leave, and said "bye" to the kids. One of them waved, but 2 of the little boys actually started crying! I don't think they wanted us to leave. I wanted to stay and hug all of them, but we had to get home and have dinner. The monkey went to bed around 7:40 tonight, and he is finally asleep at 8:00. He has to start going down at 7:30 since he will be waking up at 6:30 pretty much every morning. It is time for me to shower and get ready for bed. I have been going to sleep around 9:30 at night myself. I will update you again tomorrow to wrap up this first week at daycare.

Wednesday, August 16, 2006

Today was Simon's third day at daycare, and he was not too thrilled about being dropped off this morning. He was talkative and hyper on the way there, but he did not want to let go once we were in the room. The teacher took him and distracted him while I left. When I called later, they said he cried a little bit but got over it quickly. He also ate today! I took his sippy cup because he did not like the one at school, and he ate and drank almost everything given to him today. When I walked in to pick him up, he ran from across the room and started fake crying. I think he was telling me a story because he was not happy about me leaving him this morning. The teachers said that he is just so sweet. He is wound up now, and I had better finish making dinner. He was sleepy today even with a 2 hour nap because he is not used to getting up so early. It will be an even earlier bedtime tonight!

Tuesday, August 15, 2006

Simon is still loving school. When I dropped him off, two of the other new babies were crying hysterically. Simon decided that he did not want any part of that and sat down in the middle of the floor in the lobby. So, I picked him up, carried him in, and distracted him. We found the bin of Legos which had the race cars and animals in it. Once he was busy building, I sneaked out. I peeked in a few times before I left, and he was fine. At one point, he just became frustrated with something that was not cooperating, but he was fine once he had the teacher's help. I called around 11:00 a.m. to see if he had eaten. He had not eaten (just picked at breakfast and lunch), but he had thrown his first temper tantrum for them. They went outside to play on the baby playground, and he did not want to come in when it was time. When I picked him up at 3:00 p.m., they were coming in from the playground again. Boy, he did not want to come in then either. I picked him up and brought him in. We lingered for snack time, and he gobbled up the goldfish crackers. They did have an accident report. He fell outside this morning and bonked his forehead pretty good. It is nothing to worry about. His head is red, but he has done this sort of thing before. Once again, he had a ton to tell me on the way home. We stopped at Publix, and he very loudly told me all about his day. (I think everybody in the store now knows how Simon's day went.) Now, he has had another snack, and he is busy playing and jabbering. I guess I had better go help him burn off some of the energy. He has to get up really early tomorrow, meaning he needs to go to bed earlier tonight. I will keep you updated over the next few days as he gets settled in with this new routine. So far, he is loving it and does not really care when I arrive to take him home.

Monday, August 14, 2006

**Mommy will be posting the updates about daycare this week.**

Simon had his first day at daycare today. He was there from about 8:30 a.m. until 1:45 p.m. When I picked him up, he was just waking up from a nap. The teacher said that he was fine all day. He did not eat anything, though. Apparently that is normal at first. There were 3 other babies new to the room, and they would not eat today either. When I dropped him off, he walked right over to the toys and picked out a car. I sneaked out of the room while he was trying to join some of the other kids with the bead toy. I guess he never noticed that I was gone or anything. Tomorrow should be interesting. Today it was a novelty, but tomorrow he will know what to expect. I hope he continues to enjoy it. He sure had a bunch of stuff to "tell" me on the way home today. (I sure wish I knew what he was saying!) I just thought you all might want to know how that is going.

Sunday, June 4, 2006

Daddy has me all excited about the new Superman movie coming out. We wore matching Superman outfits today, and we went to Toys 'R Us to check out all the toys. I got a new Superman ball. Check out this video of me playing with my ball! (8.28 MB, need Windows Media Player to view.)

Thursday, May 25, 2006

Today was my discharge appointment at therapy. I ran around the place during the half-hour wait, and then I showed Donna all my tricks within 15 minutes. She was bawling because I was doing so good and am not going back. I gave her a picture to remember me by. For the evaluation, I climbed up AND down the stairs on my feet. I do somersaults. I walk forwards and backwards. I wheelbarrow when held by the waist. I squat to pick things up and then return to standing. I climb up on objects and then descend on my feet. In other words, I do the stuff I am supposed to and then some! During my visit, Lucas was there too. He is a 9-month old cutie who is learning to stand. Since I wanted to play ball with him, I helped myself to one of the balls and threw it to Lucas. Lucas's daddy caught the ball and tossed it back. Since this kid could not catch the ball, I decided to help him out by putting it in his lap and then stepping back for him to throw it. For some reason, he would not throw it. The grown-ups explained that he is too little, but Lucas looks my size to me!

Friday, May 19, 2006

I went with Mommy and Daddy today to check out 2 daycares. Both places seemed like a ton of fun. At the first center, I surprised Mommy by going up and hugging all the teachers. Then I got right to work exploring the place and playing with the kids and toys. I am not sure what Mommy and Daddy are nervous about. I had a blast.

Saturday, April 29, 2006

Grandpa Scofield came over today to help Mommy and Daddy finish changing the outlets in our house. He rode over on his bike and brought me a new ball. Check out this video of us playing. (5.55 MB, need Windows Media Player to view.)

Sunday, April 16, 2006

For Easter today, we went to Grandma and Grandpa Scofield's house. I got dressed up in my suit to go to church in the morning, and then I had my very first Easter egg hunt with my cousin Kailyn. Afterwards, we ate a yummy dinner cooked by Nan. Watch the egg hunt! (6.65 MB, need Windows Media Player to view.)

Monday, March 20, 2006

I have been getting into everything and doing well. I saw my surgeons again today, and they were excited to see me walking around. Mommy was concerned about a slight ridge that seems to run along the old metopic suture line. Everyone on my surgical team said that they are not concerned. Dr. Ricalde said that we will keep an eye on it but that it is probably where the plates are shifting together as my head grows. I still have "defects" that we are watching, namely two soft spots near my temples. We want those to eventually close. Overall, I had a good report, and we do not have to go back for another 6 months. Yay!

Monday, January 23, 2006

I went to therapy again today after a very long holiday. The therapists were thrilled to see how much I have improved. They noticed that I am much stronger and that I am doing all kinds of neat tricks. Ms. Melanie thinks that I am ready to graduate from occupational therapy, and Ms. Donna thinks that I am nearly ready to graduate from physical therapy. We just have to work a little bit more on my tummy and arm strength. They are thinking of referring me for a speech evaluation since I do not clap or wave. I am fine with the verbal communication since I regularly babble and say "Hi!" and "Trig" and "Daddy" appropriately, but they wonder if therapy might help with my nonverbal communication. Mommy and Daddy think that I just choose not to do these things. I have a very expressive face, more so than most babies. I simply do not need to do things like waving and clapping.

I had my 1-year visit to my pediatrician today. Interestingly, it was the 1-year anniversary of meeting her for the first time ever and then ending up on a whirlwind adventure with a bilirubin test and a head x-ray and a low back ultrasound. Only the head x-ray brought bad news.
Anyhow, everything went well today. I had the chicken pox vaccine and a hemoglobin test. Mommy says that I was a very big boy because I did not even blink an eye when I was pricked for the blood test and I barely cried when I had my shot. I have to go back in a week or two for another shot, but I can handle it.
The blood test indicated that I am borderline anemic, and now Mommy and Daddy have to give me iron drops in addition to the multivitamin drops. Overall, I am doing very well. We are going to work on getting me off the bottle and onto a cup, but otherwise my eating habits are excellent. Mommy and Daddy are very proud of all that I have overcome and accomplished this past year.

I had my birthday party today. Mommy and Daddy wanted to pick a day where some people can come and not be too busy with Uncle Bobby's wedding and Christmas and New Year's and cousin Kailyn's party.
I ended up having our neighbor Betty, Uncle Bobby, Aunt Karissa, Uncle Daniel, Grandpa (Harry), Uncle Aaron, and Aunt Marianne. I brought in a load of loot including lots of clothes and some cool toys, and I had my first cupcake with icing. I was tired and grumpy during the presents since I had missed my nap, but I sure enjoyed the cupcake once I got a good taste.
I was so tired that I slept in an extra hour the next morning, but I awoke ready to play with my new toys. Thank you everyone!

I went to the orthopedist today for my crooked feet. They said that my feet grew that way because I was too cramped in Mommy's tummy. We are going to wait to see if my feet straighten out as I learn to walk, which means I do not need casts or surgery at this point. Keep your fingers crossed that my bones line up soon!

I had my first Thanksgiving meal today. We had a simple dinner at home, and only Uncle Daniel (aka Uncle Fab) came over for breakfast and lunch. I ate turkey, mashed potatoes, green beans, corn, sweet potatoes, and bread off Mommy's plate. I loved it!

I started pulling myself up on my knees today. Of course, I did this AFTER coming home from therapy. I need to learn how to wave bye-bye and hand over objects, but I am getting stronger and stronger.

I had my occupational therapy evaluation today with Miss Melanie. She said that I am slightly behind but not too much. She is going to work along with Donna (my physical therapist) on the strength and tone of my arm muscles, and she is going to work with me on developing my pincer grasp. She is also going to work with me so that I do not chew on everything and so that I learn to hand objects to people.

Today I saw Donna, my physical therapist, for the first time in nearly a month. I had a substitute last time, and then I did not go to therapy for a while due to the Hurricane Wilma and then other events. She was shocked about how much I have changed. I have filled out quite a bit, and I am controlling my head so much better. I am also doing better about using my knees to crawl, but we still have to work on my tummy muscles. She showed Mommy some new exercises to do at home, including some to work on my quads.
She is eager to see what the orthopedist says about my feet next Monday. She showed Mommy and Daddy a pic of the braces that are typically given to babies like me. Apparently I will wear them only part of the time. I still need to go barefoot part of the time in order to develop the muscles in my feet and ankles. Those things do not look like fun!

Mommy took me to my pediatrician today. This visit was for the 9-month well baby. (Yes, I am 10 months, but the surgery put me slightly behind in my shots.) I weighed in at 19 lb. and 12 oz., and I measured at 28-1/2 inches. I am finally back on the charts!!! I am at the 25th percentile for my weight and 60th percentile for my length. She loved my eating schedule and variety of foods.
I only had one shot this time, and I was okay with it. It hurt at first, but then Dr. Bolanos made me smile when she killed the "bee" and threw it away.
Apparently I look very good everywhere but my feet. She does not like how my feet are still turned in, and she wrote us a script to see an orthopedist. She thinks that I will need braces to straighten out my feet while I learn to walk. We will probably have to go out to Nemours Children's Clinic or Arnold Palmer since our area does not have pediatric orthopedists.
She was concerned about two puffy soft spots around my temples and mentioned that we would need to monitor for hydrocephalus (water on the brain). Mommy told her that I saw the surgeons yesterday, and Dr. Bolanos was relieved that they found no cause for concern. She sure did scare Mommy for a minute, though.
Overall, I seem to be recovering nicely. My family members worry too much.

Daddy took me to see my surgical team today. This visit was the first time that Dr. Ricalde had seen me post-op, and she was thrilled with how I am looking. The neurosurgeon noted that my right eyebrow is slightly higher than my left eyebrow, but he observed that Daddy's eyebrows are slightly arched too. We will just be observing it as I grow. We will not be doing a follow-up CT scan unless my development gives us a reason to. All of the "defects" in my skull (puffy soft spots, bony areas, ridges, etc.) are normal and will remain for quite a while. Overall, it was a good report.
Dr. P also looked at my sacral dimple and did not think that an MRI is necessary. The dimple is closed and high up on my low back, and my legs are growing evenly and strongly. Nothing seems to indicate a tethered cord.

I had my first trip to the zoo today, but I couldn't see the animals since it was night. We went to the Zoo Boo event at the Brevard Zoo since Mommy has to work on Halloween night. I went as a baby giraffe, and my cousin Kailyn went as a baby elephant. Daddy and Grandpa dressed up, too.

We met Oompa in Brandon today to go eat lunch and shop. Mommy and Daddy say they have to babyproof now that I am crawling all over the place. They need to set up areas for me and Trig to be apart while I am racing around.

I had my second physical therapy session with Donna today. She is teaching me all kinds of stuff. I make her laugh with my tricks. She has never seen a baby spin on his tummy or bridge on his back before. They are trying to get me to stop the bridging since I had the skull surgery, but I got that habit from my genes since Aunt Jenny and Bug used to do it.

I sat up all by myself and held my bottle to completely feed myself this afternoon. Mommy was so happy to see this happen so quickly after starting therapy.

Today I had my first real physical therapy appointment. Donna (my therapist) really worked me hard! I did not cry, but I sure had a few things to say to her! She just laughed and told me that she had no guilty conscience. My favorite toy was this wiry thing with beads. Maybe Mommy and Daddy should put that on my Christmas list.

Tomorrow is my first day of physical therapy. My pediatrician says I have low muscle tone from the craniosynostosis. I guess that they will help me learn to sit up unassisted and to swallow properly.
I should have plenty of energy for the therapists tomorrow. I have been eating very heartily. I had my first taste of meat tonight, and I loved it! At dinner, Mommy mashed up some of her potatoes and carrots and steak and shared it with me. Then, for my last feeding of the day, I downed a Stage 2 jar of sweet potatoes and chicken. Mmmmm!
I had better get my nursing in and go to bed. I want to be well rested tomorrow. Maybe I can show off my new trick of getting on my hands and knees and propelling myself forward.

Daddy had his knee surgery today, and I stayed with a babysitter for the first time ever. I hung out with Uncle Daniel the whole day! We had tons of fun, but I was sure happy to see Mommy and Daddy when they walked in.
Tuesday, August 16, 2005

I have discovered how fun the computer keyboard can be! Mommy and Daddy bought me a Fisher Price piano/xylophone to keep my hands busy while we are sitting at the computer. It is loads of fun, but it is not the same as typing. Maybe I can talk them into getting me my own computer.

Now that I have teeth on the top and bottom, I am driving Mommy and Daddy crazy by grinding them. It's funny!

I drank out of a straw for the first time today. Mommy's tea looked good, so I took her straw and drank some. It wasn't as good as it looked! Mommy tried to give me some milk and water through the straw, but I only wanted the tea.

I have learned how to reach up when I want to be picked up, and I have learned how to hug. Trig comes up and stands very still so that I can wrap my arms around her neck and cuddle her. She is soft and warm.

I have a third tooth trying to cut through. When this one comes in, it will be in the very front to the right on top. It sure is bothering me, but I am still happy as long as I am being fed or held.

I finally had my 6 month shots today. My pediatrician says that I am looking good except for my weight. I am a tall boy, but I have lost weight since the surgery. Mommy and Daddy have to start feeding me more solids, and we will check my weight again in 1 month. If I have not gained, then we will be discussing how to get more calories in me. I eat and eat and eat, but I also play and laugh and squirm and roll all the time. What can I say? Life is too short to sit still!

I am finally adjusting to this post-surgery life. I am still a very hungry boy, but at least I can sleep most of the night. Mommy is happy that she can see my big, blue eyes again now that most of my swelling has gone away.

I cut my second tooth today! It is to the left of the one I already have. This tooth has made me feel cranky.

Today I was able to smile comfortably. I had tried to smile yesterday but could not because of the swelling.
Today, I have been a happy baby. I spent some time in my exersaucer and swing, and I have just been too happy with my eyes open to take a nap. I will keep fighting sleep, for I know what happened last time someone put me to sleep!

I keep getting better each day! All of our helpers went home, and now we have to get back into our routine. My eyes have opened further, and my swelling has decreased remarkably.

I came home today! My swelling has started to go down, and I even started opening my eyes before we left. I am very tired and need to rest.

After a long night with a rude nurse, I am glad that Mommy is back. She simply had to go get some sleep, even though this unit expects her to stay in the room through the night. There was no way that she could have rested with all the noise of the hospital and my roommate, so she went over to the Ronald McDonald House for some sleep.
She came bright and early to feed me, and I was able to nurse for the first time since the surgery. All the wires made it more challenging, but I sure was glad to be latched on. My face was too swollen to find the right position, and Mommy had to work with me repeatedly to get situated. Once I was on, I was very happy.
Dr. Pattisapu popped in this morning and said that I looked ready to go home. He wanted Mommy to stay with me at the Ronald McDonald House for the night and then go home tomorrow. Mommy was not too happy with this idea. Later in the day, I started to run a fever, and the staff decided that I needed to stay. Even the nurses were relieved, for they thought that it was too soon after the surgery.
Maybe I will go home tomorrow.

After getting some sleep at the Ronald McDonald House, Mommy let Aunt Marianne sleep while she came over to visit. The nurses took off some of my wires and let Mommy hold me. I downed 4 oz. of Pedialyte within an hour and wanted more. They let Mommy feed me some milk a while later. I had no problems with nausea; I was hungry! I ended up sleeping some more.
Before I knew it, the nurses were packing me up and sending me away. Around lunchtime, I was transferred to the Special Care unit to a room I share with an older boy. He also had surgery with Dr. Pattisapu but for a different problem. The nurses here seem nice too, but they are not able to give me the same amount of attention as in the PICU. Mommy is expected to start taking over some of my care.

I had my surgery today. We had to arrive at the hospital at 6:00 a.m. to check in. After Mommy and Daddy had their photos taken for an I.D. badge, we went up to the third floor for surgery. I was put in a hospital gown, and my hair was washed. Mommy and Daddy were asked tons of questions.
Once we met most of the people on the surgical team and saw Dr. Ricalde and Dr. Pattisapu. around 8:30 a lady carried me away. They covered my face with a mask, and next thing I know, I am waking up in a crib with a bunch of wires attached.
While I was asleep, I had a huge team of people working on my head and face. Mommy and Daddy waited around the hospital with Aunt Marianne, Uncle Aaron, Uncle Bobby, Uncle Daniel, and my two Grandpas. They received regular updates on my status from a nurse who called their cell phone.
More than 6 hours later, I was done and had visitors. They had me in the PICU for the first night. I was attached to a ton of stuff including IV fluids, a morphine drip, a blood line (I needed two units in all.), heart rate monitor, blood oxygen monitor, respiration monitor, and a urinary catheter. They removed my breathing tube before my visitors arrived. I was too out of it to notice much of anything. Mommy says that she felt strong through the whole ordeal until she walked in and saw me in such a state. She has difficulties when I look tiny and helpless, and she worries that I am in pain. I inherited her high pain tolerance, so she worries even more that I might be in pain and not complaining. Mommy, I am fine! I have a team of the sweetest nurses to tend to my every need. Go to the Ronald McDonald House and get some sleep!

I officially cut my first tooth today! It is the one in the front on my bottom right. I have not had any problems with teething. Mommy keeps hearing about feverish, fussy babies and hopes that I do not have to deal with that on top of my surgery!

I have been gobbling up all kinds of baby food. I have tried apples, applesauce, bananas, sweet potatoes, pears, and butternut squash. I did not like the apples, applesauce, or bananas; Mommy is going to try to mix them in my oatmeal next time. I still don't think I'll like it.
The solids will be put on hold starting next week. Since I am having my surgery next Wednesday, Mommy doesn't want to stress me out too badly. I will just be drinking Mommy's milk right after the surgery. It will take me a couple of weeks to be back to my normal self. In the meantime, I will be guzzling the white stuff.
Starting tomorrow, Daddy and I are going to hang out a bunch. Mommy has to go back to work, and Daddy is staying here with me. We won't be having much fun, though. Daddy injured his knee and can barely move right now. Mommy and I are pretty nervous about him being here alone with me tomorrow. Hopefully everything will be okay.
Yawn! Time for a nap! I must be going through a growth spurt. All I want to do this week is eat and sleep.

We finally found a food that I like: sweet potatoes! Yesterday, I gobbled up the rest of the jar. Mommy wants me to try oatmeal today. Maybe the fruits will taste better when mixed with some cereal and Mommy milk.
My teeth are slow in coming. I am still gnawing on everything in sight, so watch out! I can chomp down pretty hard. Mommy is excited about my teeth, for their arrival means I can try the fruit and veggie puffs and some other cleaner finger foods. Now Daddy will not have to worry about feeding me the messy baby food when Mommy is at work.

My surgery date is June 29. Tomorrow, we will be visiting the neurosurgeon and plastic surgeon one last time before the surgery (cranial vault remodeling with orbital advancement). They will be setting up the details of the blood transfusion, and we will let everyone know if I need blood donations.
We are in the process of searching for additional funding, as Mommy's health insurance does not pay the balance of the craniofacial surgeon's bill. We hopefully qualify for Medicaid to help. (We probably qualify for regular Medicaid, but if not, then we definitely qualify for Medicaid for the medically needy.) I try to help Mommy search for stuff on the 'puter, but she says that she can do things faster without my help.
On a happier note, I am having a blast standing. At my 4 month well-baby visit, Mommy and my pediatrician had concerns about my muscle tone. I was keeping my legs folded up and was refusing to put my weight on them. I had them worried that I was having muscle tone problems due to my skull problem. The pedi said that if things did not improve after the surgery, then I might need physical therapy to learn how to walk. Well, I had them all fooled! Mommy started putting me in my exersaucer a few days later, and I had a blast. Ever since then, I have wanted to stand all the time. People's squishy laps are especially fun.
I am just constantly on the move now. Mommy and Daddy have started to rearrange the living room. I roll all over the place and try to explore all the interesting things they have. For some reason, those cords and holes in the wall are off limits.
Mommy has started trying solids with me. I do not mind the spoon thing she uses, but the stuff on the spoon is horrid. The apples and bananas are just not my thing right now. Mommy is talking about something called sweet potatoes for next week. I am not looking forward to this. Speaking of food...it is almost dinner time! I had better go look pitiful and cry so that Mommy lady will feed me again. I love my Mommy's milk!

I had my last pre-surgery CT scan today. They had to give me IV sedation so that I would be perfectly still. The appointment was for 1:00 p.m., and Mommy could not feed me after 5:00 a.m. Ugh!
They first tried a medicine that acts like Valium for babies so that they could possibly avoid anesthesia. After they injected that stuff up my nose, I became FURIOUS! About 20 minutes later, they decided that I needed the IV after all. The medicine just made me go into a huge tantrum.
They tried to get the IV in my arm, but I moved so much that they lost it. They finally got it in my foot. Mommy held me and tried to comfort me the whole time. The nurse took me to calm me down. I fell asleep, and then they did the CT scan. Mommy was invited to be in the room during the scan, but she decided to take a break. I had stimulated her milk production so that it soaked her shirt, and she felt a need to relax and dry out.
Once the scan was over, I woke up with no problems. I immediately tried to roll off the gurney while babbling. My babbling had them very nervous at first since I like to make gasping sounds. They thought that I was going into respiratory distress until Mommy assured them that I was fine. Mommy will have to tell the anesthesiologist about this for my surgery so that they do not freak out when I wake up.
I was kept for 2 hours for observation. I downed some PediaLyte immediately and then nursed half an hour later. I then took an hour long nap. Needless to say, the anesthesia did not cause any problems for me. At least everyone will have one less thing to worry about at my surgery.

The test came back negative for the TWIST mutation. The geneticist was so sure that we have the Saethre-Chotzen Syndrome, but I guess we need to do more testing. We will keep everyone posted.
Hmmm...if we do not find a common syndrome, can we call it the Simon Syndrome? The alliteration is nice.

I am a VERY social child: I talk and talk and talk to anyone who will listen or not. I can hold my head up all by myself, and I like to roll both ways to get to my toys on my blanket.
My eyes are looking very healthy, but we will continue to monitor them after the surgery. Mommy is getting checked out by my eye doc too so that we might figure out the causes of the blindness.
We discovered that I am double-jointed when I had blood drawn for genetic tests. With 3 people holding me down, I still managed to get a leg loose! I was not happy! It was a little easier to hold me down for my eye exam, but I still put up a good fight. Oompa says that Mommy is seeing herself in me. All I know is that I do not like to be held down.

The neurosurgeon and plastic surgeon have confirmed that I have bilateral coronal synostosis, and they want to do my surgery in July. I will be six months old, and I will be better able to handle the surgery. Six months is thought to be a good time so that we can reduce the chances of me having a second surgery. My bones and immune system will also be stronger. We are having genetics testing done this month to try to solve the mystery of this defect Mommy passed to me, and we are visiting an ophthalmologist to monitor my vision. Since Mommy is blind in one eye as are her mother and grandmother, we want to catch anything that happens to my vision right away. We will visit the neurosurgeon and plastic surgeon again in late May or early June to check my development. We will probably set up the surgery details closer to that time as well. I will also have an MRI when I go in for surgery to check my sacral dimple. We want to make sure that I do not have a tethered cord before I begin trying to walk. If I have a tethered cord, they will have to snip it; otherwise, I may experience delays (possibly irreversible) while learning to walk.
On a happier note, I am a very happy baby. I have been full of coos, giggles, and other adorable noises when "talking" to people, especially the ones I love. I make Mommy's heart melt every day.

I am on my way to being a mover and shaker. Last weekend, Daddy came to get me up for the morning, and I had rolled from my tummy to my back. I waited a whole week to repeat. This morning, I rolled from my tummy to my back right in front of Mommy! I am smiling all the time now, and I make little screeching noises when I am happy. I can push myself up when on my tummy, and I can scoot when on my back.
Last week, I went in two times for a CT scan. They are doing a 3D reconstruction of my skull to see what needs to be done in surgery. The technician and Mommy said that I was a very good boy. I just watched the pretty lights and sucked on my paci or bottle. They did not have to sedate me, which made Mommy very happy. Today, the neurosurgery team will be discussing the scan results and talking about what needs to be done soon for the surgery. Mommy hopes that everything can be done before she goes back to work, but she also does not want to push them to do it too early. If they do it too early, I might have to go in for another surgery later. Yuck!

I am doing all kinds of neat stuff now. Since my baby blues are open more often, I use my time awake to focus on the world around me. More and more I like to make Mommy and Daddy happy by flashing a huge grin at them.
I am also getting stronger. I can hold my head up by myself for pretty long periods of time, and while on my tummy I can push myself up and hold my head up.
Most importantly, I am learning about cause and effect: the cause of a booby or bottle being brought out produces the effect of getting fed. Mommy loves the lip smacking and noise making that I do when I want to eat and then the "ahhhing" that I do once the milk meets my mouth. I impress Mommy and Daddy even more when I hold my bottle to feed or wrap my arms around their necks for the burp. All I know is that I am absolutely starving and want to eat! Have milk; got cookies?

Mommy and Daddy have been very busy taking care of me and running to various doctor and hospital appointments. Half the time, Mommy is being seen since her c-section incision decided to collect fluid and become infected. The other half of the time, I am being seen for shots, a circumcision, x-rays, and ultrasounds. I have the same genetic problems Mommy has, so I will be having surgery on my head in the near future. (I have bilateral coronal synostosis.) Keep me in your thoughts and prayers!

At 3:44 a.m. I made my grand entrance into the world. Mommy's water broke at 6:15 p.m., but I was not born until later because I was stuck in the birth canal for a while. They ended up doing a c-section to pull me out, and I immediately made my mark by pooping on Mommy and peeing on the nurse. Oh well. They shouldn't have taken me out of my warm, comfy home! :)
If you want to hear more about me from before I arrived, go to www.babiesonline.com/babies/t/trigssib/ and use the password 010405.