Thursday, April 1, 2010

Just as I am getting used to the hearing aids and wearing them to school, I have a new thing: the tooth doctor! This was fun. We saw Dr. Tarver in Lakeland, and I had a blast. I came out with pearly whites, a balloon, 3 stickers, a toy car, and 2 toothbrushes. I have 2 small cavities, one on each rear top molar. They will fill those next month after giving me some light sedation. In the future, some of my teeth may have to be strategically pulled due to crowding in my mouth. I have a highly arched palate and a small mouth, probably due to the cranio or syndrome. Dr. Ricalde (my craniofacial surgeon) is confident that I will need orthodontia in the future.

 

Friday, March 12, 2010

I had an evaluation with the school board today. The initial screening had come out inconclusive, so this was a full evaluation. In most things, I am either at the normal range or just above normal. I had high scores in math and science things, naturally. I scored below normal in expressive language. We have to wait for a phone call to see if I qualify for services next year in kindergarten.

 

Monday, January 29, 2010

I wore my hearing aids to school for the first time today. I have been doing well at home, and the audiologist recommend that I have them during class. My teacher talked about them with the class, and it was cool.

 

Wednesday, February 24, 2010

I got my hearing aids today. I do not like them, but I am not allowed to watch TV unless I wear them. If I must, I must; but I promise to go down kicking and screaming.

 

Sunday, January 24, 2010

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

I have not posted in a while due to the busy nature of work and life. I do want to take a moment to mention that the travel and medical bills for Simon's tests, surgeries, and now hearing aids are too steep for us to handle right now. If you would like to contribute, please e-mail me at craniomommynbaby@yahoo.com I will give you the information of the offices where we still owe money.

Thank you.

 

Wednesday, December 16, 2009

Today, I had my third set of ear tubes put in. The old ones fell out, as they should; I got t-tubes this time. Grandpa Harry came to help Mommy because my cousins are staying here this week. After surgery, we went to McDonald's and had a blast. I was a little quieter the rest of the day; the surgery made me kind of tired.

 

Thursday, October 8, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

Okay, I need to organize the surgery bills. Here is what I have so far, and I have no idea how we are going to pay for this.

Hospital Stay: $750 of the $102,365
Anesthesia: $414.80 of the $2,822
PICU Doctor: $586.87 of the $4,132
Neurosurgeon: $1,122.82 of the $33,269
Craniofacial Surgeon: $3,371.43 of the $31,000

Grand Total: $6,245.92 out of $173,588

We have an out-of-pocket maximum of $5,000, but I have no idea what that means. Maybe we will owe less to some of the bills; I need to call the insurance company soon to get more information.

We also owe $150 for the first hearing test and likely another $150 for the second one.
The hearing aids will be around $2,200 out of our pockets.

 

Friday, September 25, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

The appointment on Wednesday, September 2, went well with the craniofacial surgeon. She said, "Momma, I think that you can quit worrying for now." Of course, that is way easier said than done. I have no idea if this is the last time we have to go through this or not. I will try to relax, though.
This past Wednesday (September 25), Si saw one of his neurosurgeons along with a large entourage of people who are from Arnold Palmer Hospital or are doing fellowships. They were a very friendly bunch and found it hilarious when I had to pull Simon out from under the chair by his feet. Dr. P did manage to extract the kiddo and tickle him into submission. Dr. P likes the shape of his noggin and wants us to return after the holidays to make sure the plates and screws are doing their thing.
Next Friday, Si has his hearing aid evaluation, and they might do the molds the same day. My insurance company does not cover the aids, but I can get a discount through a certain company. I am checking into the Lions Club. Our income is too high for their need-based program, but I am awaiting news on whether we can get refurbished aids. On October 30, he has an assessment through the Child Find program. They will look at everything, including whether or not he needs physical and occupational therapy. I know that he is good on everything but speech.
Dr. P said that lots of kids come to the cranio clinics with hearing aids. One of the fellows told me that it is common, especially with syndromic cranio. There is quite a bit of pressure put on nerves due to skull shape, which can cause some of the damage. The hearing loss will not improve, but it may be stable. I left feeling disappointed. I am still adjusting to this whole idea of hearing aids and batteries and IEPs and FM systems and lack of insurance coverage. Actually, I am feeling pretty sick about it.
I am considering again the genetic testing. The neuro thinks that it is good as the geneticist can help us to put it all together. Answers would be so nice, but I am scared of the possible blacklisting by health insurance companies. I wish that things were more cut and dry.

 

Tuesday, September 1, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

Simon has been doing very well. Now that the swelling has gone down, ridges have appeared. I took pictures of the one on top of his head as it is the most noticeable, and I e-mailed them to the craniofacial surgeon. She thinks that it is likely the way the bone is shaped as they did take the existing bone above his forehead, cut it out, rotate it, and put it back on. She hopes that his head will smooth out as his skull grows. I hope so, too. I know that we should expect lumps and bumps after these surgeries, but this surgery was supposed to give his brain more room and smooth out his head with the bone grafts and bone paste. His forehead looks great, free of the dents and pulsing soft spot. We will see the craniofacial surgeon tomorrow for an appointment, and hopefully one of his neurosurgeons will be there too.
Next month, Simon will have an assessment through Child Find to evaluate everything. I have the appointment primarily for his speech, and I still have to make an appointment with the audiologist to discuss hearing aids. With school back in session, these things are getting harder to do.

 

Wednesday, July 29, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

We look at Simon and forget that his surgery was only 2 weeks ago as of today. At the same time, we cannot believe we are already 2 weeks into being on the other side...again. He is doing great. His stamina has increased quite a bit, but he still runs a low fever in the evenings if he does too much during the day. He wants to go to the park and play on the slides or go out back and play in his sandbox. It is tough to keep telling him that he can't. We hope that the surgeons give him the clearance to return to life as usual when we go on Monday. In the meantime, he is back to himself when playing in the house, as you can see by the pics. My happy little boy is still here!

 

Tuesday, July 21, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

One week ago at this time, we were enjoying a lovely meal cooked by volunteers at the Ronald McDonald House. It was the beginning of one of the more difficult weeks of our lives thus far, and we are amazed today at how far Simon has already come. He is getting back to his playful self, but he still takes it easy. I think that too much action makes him a little woozy. Truthfully, we are very thankful that he has not returned to his old self yet. He has at least a week to go with the stitches in his head. On August 3, we have the follow-up appointment in Orlando at the neurosurgeon's office and should find out if he is clear to return to life as usual. In the meantime, Simon does not seem to have a full awareness of what has happened. He is proud of his new haircut and keeps stroking the top of his head. We got him a fish as a get-well present. It is a red betta in a 3-gallon tank, now named Mr. Red Fish. I am not sure if Simon has grasped the significance of the gift, but we enjoy watching him enjoy the fish. In about a month, we plan to have a party in celebration of him making it through this ordeal like a champ. For now, I am enjoying the time at home with him and not really wanting to go out much. A week ago, I was looking at my baby and wondering if our time with him could possibly be too short. Now, I am looking at him and thankful that we are still all together. All of these moments are to be treasured.

 

Sunday, July 19, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

It is good to be home. We are slowly returning to normalcy or whatever normal is when your kid has train tracks across his head. The alternating Tylenol and Motrin seems to be keeping him quieter and calmer, which is a very good thing. He is also getting used to me smearing the incision with the iodine and ointment 3 times a day. The swelling has gone down since even yesterday, and he is enjoying his toys and movies. We have not caught up on the missed sleep yet, but we are working on it.

 

Saturday, July 18, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

Simon was discharged from the PICU this morning. His eyes are wide open, and the swelling is going way down. He is so happy to be home with his trains and videos. Now we have to survive 2 weeks with an active 4-year-old who has stitches in his scalp from ear to ear.

 

Friday, July 17, 2009

His eyes opened this afternoon! I cannot express how much joy I felt when I saw that. There is a light at the end of this tunnel. Tonight, he drank about 2/3 of an instant breakfast shake. Hopefully his appetite will take off tomorrow.

 

Friday, July 17, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

We are still hanging out in the PICU with orders to move to the Special Care floor if a room opens. Yesterday, the dripping blood was finally stemmed when another surgeon came by to glue a little hole together with Dermabond. His eyes completely swelled shut last night, and he freaked. Today, he is adjusting to the blind life. His last dose of morphine was at 6:15 a.m. yesterday, and he has been on Tylenol since then. He went most of the day yesterday without medicine buthas been needing it regularly since last night. He acts like his legs and head are itching or tingling. He has been refusing to eat or drink, meaning the IV pole is an accessory that follows him around, usually to the potty. They did take him off the IV today to see if he will start to eat and drink. Before the current nap, he ate a cup of apple sauce and some M&M's. After we stopped doing morphine yesterday morning, he did not seem to need much pain medication. He did start needing Tylenol on a regular basis as of last night; it helps him to relax and sleep.

 

Wednesday, July 15, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

It is 7:15 p.m., and we have not seen him yet. :( The surgery was over around 4:30 p.m. He did very well, but it was a very involved surgery. They ended up needing the 2 units of blood due to all the scarred tissue. His noggin is much bigger as his brain definitely needed the room. They used his bone to reconstruct and then the bone paste to fill in the holes. We are exhausted and hope that we don't get more of a runaround when we walk over at 7:30 p.m. to finally see him.

 

Wednesday, July 15, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

Well, we reported at 8:30 a.m. The pre-op vitals went well, but he got pretty irritated after the goofy juice. They wanted him to stay seated, and he wanted nothing doing. After 10 - 15 minutes of pinning him down, the juice finally kicked in. Man, it was like a drunk switch went on and was pretty funny. The head nurse carried him out with a promise to see some cool balloons, and Simon went pretty willingly. That was around 10:30 a.m. Since then, we have gotten one phone call saying that surgery was in progress and everything was fine. That was at 12:18 p.m. It is now 2:34 p.m., and we have not gotten more updates. The neurosurgeon figured that the surgery would last about 3 hours, but we assumed a window of 3 to 5 hours.
They have bone paste on hand to fill in the holes. I guess the neurosurgeon has his concerns about there being enough bone for the split bone graft. Honestly, that upsets me quite a bit. I have read of some accounts where the bone paste gets absorbed by a kid's body and more surgery has to be done later. The thought of doing anything like this again is too much to bear.

 

Tuesday, July 14, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

We are nestled snugly into our room at the Ronald McDonald House. Simon is fast asleep, and we are still full from a wonderful BBQ hosted by an army of volunteers. The dinner included burgers, dogs, chicken kabobs, mashed potatoes, mac 'n cheese corn casserole, ice cream, cookies, watermelon, and some other stuff I have probably forgotten. It is amazing what people pull together and do here for the families who stay. Sure, there are some rules that are a tad of an inconvenience, but you just can't beat the place. I only wish that I lived closer so that I could do more than the pop tab collection.
Anyhow, getting back to our situation, the surgery was postponed by a few hours. Instead of starting at 7:30, we start at 10:30. This means that we report at 8:30. Our only concern is that Simon is going to be antsy in the morning. He usually starts his day with a milk-yogurt-instant breakfast shake, but he will not be able to have anything of the sort when he wakes up. Hopefully we can distract him with the play room down the hall. Wish us luck!

 

Tuesday, July 14, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

We are heading to the Ronald McDonald House in a little while as we do have a room. Woo hoo! Now, we will be able to walk over to the hospital at 5:30 a.m. tomorrow. Simon is so hyper today, as usual. He will be excited about staying at a new place tonight. Hopefully, the events of the next few days will not scar him too much. I want to bring home my happy, sweet, active boy.

 

Sunday, July 12, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

I have been struggling with nausea today, and Simon has had a bit of a stuffy nose. I think that I ate too much and too late for dinner last night, and we guess that Simon is having a bit of an allergy with the weather that came through here. We are hoping and praying that we all are healthy this week. Postponing the surgery would be a major upheaval.

 

Friday, July 10, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

We had a busy morning in Orlando. At 8 a.m., we had to finish a hearing test since the results were inconclusive during the first attempt. The diagnosis is that Simon has a mild loss in both ears which does qualify for hearing aids. My insurance does not cover hearing aids, giving us the challenge of finding a way to get them covered or paid.
After the test was over, we walked a few blocks to the main building for a pre-admissions testing. Simon was a very good boy during all the vitals and even the swab on his arm. The blood draw was harder, but he at least did not require a straight jacket and 5 adults. (In the past, that is what it took!) He stayed in my lap and strained some, but they were able to get it done pretty smoothly.
After the testing was over, we took a load of pop tabs to the Ronald McDonald House, and then we picked up the hearing test report. On the way home, we stopped at the Golden Arches so that we could eat and Simon could play. Now, we are home and watching a severe storm roll in. It was a draining day.

 

Thursday, July 9, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

Now both units of blood are ready to go, and the pre-op testing is tomorrow. His new room is shaping up nicely. He will be in his bed before the operation, and we plan to get him a fish as a get-well surprise. Hopefully, the fish will be in his room when he comes home next weekend.

 

Monday, July 6, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

I cannot believe that the surgery will be next Wednesday. One unit of blood is ready to go thanks to a dear friend, and another unit will be ready to go after Wednesday when my sis comes over. I have to call tomorrow to schedule the pre-op stuff and to see if we can do a hospital tour around the same time. The tour is more for Simon's sake as we remember too well the process and facility. If we are lucky, we will be able to do all of this either Friday or Tuesday, when we will be over that way anyhow. On Friday morning, he is finishing the hearing test, and on Tuesday, we will be going over to check into a room (either at the Ronald McDonald House or a hotel). I debated whether to get his hair cut beforehand, but I think that I will save the $20 and have the surgeons shave it all off. It will grow back before the staples even come out, and then the scar will be hidden before long.
Everyone keeps asking if Simon knows what is about to happen. I really do not know how to answer that question. We read books about Curious George going to the hospital and Franklin going to the hospital, and I talk to him about what will happen when he goes to the hospital. I am sure that he is listening, but I do not think that he has enough of a frame of reference to comprehend. At 4-1/2 years old, he is a bit young; and matters are more complicated due to his speech delay. He is very familiar with hospitals and various machines, but I have no idea how to prepare him for the aftermath. He will have staples from ear to ear for a few weeks, and we will be putting all kinds of gunk on the incision. His entire head will swell up for a few days with his eyes swelling shut for a short time. How do you explain all of this? The answer is that you really don't. He has seen pics of himself from the first time through, but I don't think that he relates the baby to being himself. Even if he did, he would not remember what it all felt like. I really hope that we will be able to make him as comfortable and happy as possible through all of this. They say that it is harder on the parents than the kids, but is it really?

 

Thursday, July 2, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

We returned today from our excursion to the Smokies to say our final farewells to Chris's mother. The trip was a good one, even if the purpose was difficult. This summer is one of many major events, and the key to survival is taking one day at a time. Now that we are home, our next focus is getting the house into a decent state. During the school year, we don't have nearly enough time to keep up with necessary things and find ourselves doing some major cleaning during the summer. One of our projects will be getting Simon's "big boy" room ready. He is getting a new queen bed and will start the transition now. This way, we can get him comfortable in it before the surgery, and then we will have a place for one of us to comfort him when he comes home. The kiddos who have this surgery usually need about a month to get back into a normal sleep schedule. It is hard to say whether the anesthesia has disrupted their rhythms or if they are afraid of the dark after having their eyes swollen shut, but they usually need lots of comforting and holding in the weeks of recovery. We hope to have a comfortable place to take turns with him at night so that we can alternate in getting some sleep. If all goes well, we will all be ready to return to routine when the school year starts again. Chris and I will have a new crop of young minds to mold, and Simon will start pre-k. Simon's noggin should be healed in time for soccer season, giving us some sense of a normal family life. We all have so much to look forward to.

 

Monday, June 22, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

One thought that many of us cranio parents keep having is "Why are we putting our child through this? Is it necessary? Is it really worth it?" The surgeries are necessary, and we have to put our children through them so that they can have a good quality of life. Without the procedures, the deformation of the skull harms the child, in some cases to a point of being life-threatening. Each person's skull contains so much of what makes them who they are and allows them to live: a brain, eyes, nose, ears, and mouth. If the bones are not forming properly then one or more of these may be compromised. So, obviously, the surgery is needed. Still, the mommies and daddies who have to make this decision are burdened with the knowledge that they are putting their child's life into a stranger's hands. If something happens, the parents will feel that they have failed the child in offering the protection and safety that is inherently promised upon conception. It is a struggle, one of which plagues me right now.
I know that Simon needs to have this second surgery. His soft spots are getting larger, and his forehead has tiny holes. His brain does not have enough room to grow at the front of his skull, and he needs to have the holes filled in before he is out in the world of sports and rough play. Still, I feel twangs of guilt at putting him through it. I try to squash those feelings by thinking about why else this needs to be done. Simon is not at the same level as his peers in his speech, and I wonder if he might have headaches at times. This kid does not complain when he is in pain, but perhaps some of his odd behaviors are linked? Or do we just have a unique kiddo on our hands? Will we see improvements after the surgery? Or will he be a child who ends up struggling in school? Chris and I are of high intelligence, and we do not expect that our child must live up to what we can do. Yet, will we know how to handle things if Simon ends up being at the other end of the spectrum? To us, he is bright and creative and amazing, but we are his parents. How is he really, and how will he be after July 15? Only time will give us the answers. I must have patience and remain open to all the possibilities. Most importantly, I just have to treasure each moment with my little boy and make sure that he has no doubts about how much I love him.

 

Sunday, June 21, 2009

** Mommy has taken over my blog for a bit to get through this next surgery. I promise that you will hear from me again some time soon. :) **

I am a huge roller coaster fan, mostly of the steel behemoths that newly grace theme parks nowadays. I do not care for most wooden coasters, with the exception of Lightning Racer at Hershey Park in Pennsylvania. The steel behemoths either thrill me or relax me, either way triggering endorphins and other chemicals that give a natural high. With that said, the cranio coaster has been more like an old wooden coaster that has fallen into disrepair. The lap bar does not lock into place, and the car rattles so much that teeth fall out. The brake system, when it works, causes whiplash. Occasionally, cars fly off the tracks or tracks just break apart underneath the strain. The riders make it through intact but in need of some therapy. Many folks who get to take this ride only have to go through once. Soon enough, the ride is a distant memory, and those families remove themselves from it as much as possible. For us, the ride is on for a second time. My son inherited the condition from me, and his has been a more difficult case.
We want to thank all of you who are following our story and keeping us in your thoughts and prayers. During this stage of our journey, we are doing our best to get through some other major events in our lives, hoping that our minds can stay occupied enough to not reflect on what our child is about to endure again. Last time, fear of the unknown threatened to cripple our daily lives; this time, fear of the known threatens to do the same.

 

May 22, 2009

I had a hearing test today at Arnold Palmer but fought too hard for them to get a good reading. My left ear seems okay; my right ear is iffy. We will go back for a new test soon.

 

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!"

 

Wednesday, March 21, 2007

Today, 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.

 

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!

 

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.

 

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 am 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!

 

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