I have been negligent in my blogging duties. I apologize. Let me start this entry by passing along the good news that Bram received a clear MRI result on Thursday, July 19th. I am very grateful for everyone who has followed Bram's progress and kept him in their prayers. Thank you.
Well, Bram graduated kindergarten; he will be moving on to first grade next year. The Tri-County Special Education Coordinator agreed that the problems Bram was encountering at school needed to be addressed with additional modifications, not retention. We have added Content Mastery to Bram's modifications so that he can get one-on-one help when needed. CM will also offer him a place with fewer distractions. Bram is a bit of a social butterfly. He will talk to anyone, play with anyone. As someone recently said to me, "Wow. He doesn't know a stranger, does he?" He is definitely a people person. He is also very excited about being a first grader. He is ready for school to start.
The human growth hormone shots seem to be working. I think Bram's endocrinologist was a little disappointed with the results, but I really think Bram has grown more than the doctor's records indicate. I think the initial measurement may have been wrong. My records indicate that Bram has grown 2 1/2 inches since starting the hormone. His is now 41 1/2 inches (according to the cardiologist's measurement on Monday). I still need to confirm that measurement.
Thanks to a very kind friend of mine, Bram has had the opportunity to go swimming quite a bit this summer. When I first took him to her house, he was not eager to get in the water. All previous attempts to get Bram in a swimming pool resulted in him clinging to my back. He would only go in the pool if I carried him piggy back style - even though he was wearing a flotation vest. Now, however, Bram will go into the pool with only the assistance of his flotation wings - no more clinging to Mommy.
Bram is sitting beside me right now and wants me to let you know that he just got a new hamster. He has named it Hulk. While the hamster is a wily, wriggly, little thing, Bram is able to play with it when we put the hamster in its exercise ball.
While I am relieved that the MRI is over - and that the results were exactly what we hoped they would be, Bram still has a couple more medical appointments this summer. Since Bram failed his school eye exam while wearing his glasses, he'll be seeing his ophthalmologist in August. I don't really expect the doctor to detect a change in Bram's vision. I have a feeling that Bram was just being silly the day of the exam; however, it's best to be cautious, so I made the appointment.
Bram also has an appointment with the neuropsychologist in August. The neuropsychologist conducted a battery of cognitive tests on Bram a little over a year ago. He wants to test Bram again to check his progress. The psychologist will also be administering, per my request, a dyslexia screening. Although Bram has started reading, he still confuses b, d, and p as well as some other letters. He also sometimes tries to read the word backwards. However, it was Bram's struggle with identifying patterns that convinced me to have him screened. If asked to complete the pattern, Bram could not do it on his own - outside the basic AB pattern. However, when I started having him call out each item in the pattern, he was then able to complete the pattern. He seems to have trouble filtering visual "noise."
If the psychologist determines that Bram is dyslexic, I am hoping that the school will place him in its dyslexia class. Bram's school doesn't test and diagnose dyslexia until 2nd grade. Hopefully, they will allow Bram to join the 2nd grade dyslexia class - and not make him wait a year.
Finally, Bram celebrated his 6th birthday this past June. We had a small birthday party at home with just his cousins. Papaw and Granny went in with me to buy him an Xbox Kinect game system. I'm really glad we got it for him. The Kinect sensor gives Bram a chance to participate in activities that he is not yet strong enough to do in the real world. Bram has become quite the Xbox bowler. His high score so far is 160. He now gets quite frustrated if he doesn't get a strike. He is really enjoying his birthday present.
In this post, I've tried to summarize the major events that have occurred since my last post; however, it's the little things that make me smile the most. Just yesterday, we were in the car and listening to a song on one of my CDs. Bram had only heard the song a few times. When we got out of the car, I started singing the song, and Bram suddenly jumped in at the chorus and started singing along. I smiled and marveled at how quickly he had picked up the song. I smile when he goes into his bedroom and comes out fully dressed in a color coordinated outfit that he chose completely by himself. I was happily surprised when he spontaneously started taking his cup and plate to the kitchen sink after he was finished with them. Every little achievement brings me joy. Simply having the opportunity to watch him grow and mature makes me joyful. It also makes me a little sad - in the normal mommy way: My little boy is growing up and becoming independent. It makes me grateful, happy, and proud, but some days, it also makes me a little wistful. I comfort myself by snuggling a little longer those nights. Thankfully, Bram still loves to snuggle.
I think that's it for this post. I will endeavor to post a little more regularly from now on. Thank you again for following Bram's progress and for keeping him in your thoughts and prayers.
Sincerely,
Bram's Mom
Saturday, July 21, 2012
Saturday, April 28, 2012
April has been a pretty busy month in our household. Bram started human growth hormone on April 3rd. He is dealing very well with the daily shot. He was a little nervous at first but soon realized that the shot doesn't hurt. I measured him before he started the hormone and then measured him again about three weeks later. I couldn't believe my eyes. Bram had grown a little over a quarter of an inch in just under three weeks. He already needs new pants and new shoes. The nurse suggested that we buy sandals until the initial growth spurt is over. Apparently, his feet will probably grow two or three sizes rather quickly. My little man is growing!
Bram and I are both looking forward to the rapidly approaching summer months. We are both ready for the school year to be over. I was hoping to go visit my brother in Georgia this summer; however, it looks like we may need to postpone the visit. I'll be spending the summer getting Bram ready for 1st grade. While I work with Bram every summer, this summer will probably require more intensive tutoring. You see, Bram's kindergarten teacher is going to recommend that he repeat kindergarten. I am going to oppose her recommendation, for I really don't think retention will serve Bram. Nor do I think it is warranted. Bram is doing really well in school. He is reading independently. He can also identify numerals from 0 to 100 (although he does struggle some with the teens still - but then don't we all? ;^). He writes his name - although his print does need a good deal of work. (Bram was right-handed before the tumor but, due to muscle weakness in his right side, he had to switch to his left hand after the surgery.)
I have examined the Kindergarten objectives and expectations set by the state of Texas, and it looks to me like Bram has met them; however, Bram's school has set higher standards. His teacher feels Bram is struggling with the more difficult math concepts and states that he needs one-on-one attention to do the work. She is also not satisfied with his sight word progress. The state of Texas says that Bram should be able to identify a minimum of 25 sight words. Bram can identify over 60 sight words. He consistently identifies 50 of the 56 sight words his school has set as their standard.
Bram's struggles stem from slow processing, attention/focus difficulties, and possibly recall issues - all likely the result of radiation. Bram is also showing possible signs of dyslexia; however, he can't be properly evaluated for dyslexia until the age of 7. I have explained to the school administrators that Bram's difficulties will not be solved by retention, that they need to be addressed with accommodations next year. I am hoping to add content mastery to his education plan so that Bram can receive one-on-one attention in math - when needed. I have also pointed out that while sight word and numeral recognition is important, Bram needs to be given a little extra time to recognize the number or word being tested - due to his slower processing speed. Despite these learning challenges, intelligence tests placed Bram in the average range, even above average in some areas. I will be addressing all my concerns in Bram's end-of-the-year ARD. I fully expect Bram to move on to first grade next year.
While I plan on insisting that Bram be promoted to first grade, I recognize that Bram needs some one-on-one instruction to get him ready for next year. Consequently, we're going to stay home this summer and work on the skills he will need next year. We'll also do plenty of fun things this summer; they'll just be closer to home. We'll take weekend trips instead of one long vacation. I plan on enrolling Bram in swim classes this summer, so a trip to Galveston is definitely on my short trip list for the summer. I'd also like to take him to Sea World in San Antonio and maybe visit the Alamo and the San Antonio Children's Museum again.
Cute anecdote alert. Bram went on his first field trip this week. I took a day off from work and attended as well. All three kindergarten classes went to the Children's Museum in Commerce. The kids really enjoyed the trip. Bram cracked me up while we were there. He volunteered for a demonstration that involved a homemade air cannon (made from a large plastic garbage can) and styrofoam cups atop the heads of the kids). As Bram was walking toward his spot, the docent tapped his head with the stack of styrofoam cups. Bram, without missing a beat, said, "Hey. Don't you know I'm very fragile???". I laughed out loud. "Fragile" is not a word I ever use to describe Bram, so I'm guessing he picked this word up from his kindergarten teacher. I suspect she uses the word when the other students get too rough, and Bram has a genuine knack for picking up impressive vocabulary (let's not forget that he's only five). He routinely makes people laugh with the words he uses (uses correctly, might I add). Vocabulary was one of the intelligence areas where he scored in the high range. Isn't it a shame they don't test comedic timing? :o)
Well, that's about it for this installment of Bram's blog. I hope everyone is having a wonderful 2012. I will be sure to update again this summer. Bram's next MRI is in July, so be sure to check back during that month. We could definitely use your thoughts and prayers - as always. And as always, they are greatly appreciated.
Bram and I are both looking forward to the rapidly approaching summer months. We are both ready for the school year to be over. I was hoping to go visit my brother in Georgia this summer; however, it looks like we may need to postpone the visit. I'll be spending the summer getting Bram ready for 1st grade. While I work with Bram every summer, this summer will probably require more intensive tutoring. You see, Bram's kindergarten teacher is going to recommend that he repeat kindergarten. I am going to oppose her recommendation, for I really don't think retention will serve Bram. Nor do I think it is warranted. Bram is doing really well in school. He is reading independently. He can also identify numerals from 0 to 100 (although he does struggle some with the teens still - but then don't we all? ;^). He writes his name - although his print does need a good deal of work. (Bram was right-handed before the tumor but, due to muscle weakness in his right side, he had to switch to his left hand after the surgery.)
I have examined the Kindergarten objectives and expectations set by the state of Texas, and it looks to me like Bram has met them; however, Bram's school has set higher standards. His teacher feels Bram is struggling with the more difficult math concepts and states that he needs one-on-one attention to do the work. She is also not satisfied with his sight word progress. The state of Texas says that Bram should be able to identify a minimum of 25 sight words. Bram can identify over 60 sight words. He consistently identifies 50 of the 56 sight words his school has set as their standard.
Bram's struggles stem from slow processing, attention/focus difficulties, and possibly recall issues - all likely the result of radiation. Bram is also showing possible signs of dyslexia; however, he can't be properly evaluated for dyslexia until the age of 7. I have explained to the school administrators that Bram's difficulties will not be solved by retention, that they need to be addressed with accommodations next year. I am hoping to add content mastery to his education plan so that Bram can receive one-on-one attention in math - when needed. I have also pointed out that while sight word and numeral recognition is important, Bram needs to be given a little extra time to recognize the number or word being tested - due to his slower processing speed. Despite these learning challenges, intelligence tests placed Bram in the average range, even above average in some areas. I will be addressing all my concerns in Bram's end-of-the-year ARD. I fully expect Bram to move on to first grade next year.
While I plan on insisting that Bram be promoted to first grade, I recognize that Bram needs some one-on-one instruction to get him ready for next year. Consequently, we're going to stay home this summer and work on the skills he will need next year. We'll also do plenty of fun things this summer; they'll just be closer to home. We'll take weekend trips instead of one long vacation. I plan on enrolling Bram in swim classes this summer, so a trip to Galveston is definitely on my short trip list for the summer. I'd also like to take him to Sea World in San Antonio and maybe visit the Alamo and the San Antonio Children's Museum again.
Cute anecdote alert. Bram went on his first field trip this week. I took a day off from work and attended as well. All three kindergarten classes went to the Children's Museum in Commerce. The kids really enjoyed the trip. Bram cracked me up while we were there. He volunteered for a demonstration that involved a homemade air cannon (made from a large plastic garbage can) and styrofoam cups atop the heads of the kids). As Bram was walking toward his spot, the docent tapped his head with the stack of styrofoam cups. Bram, without missing a beat, said, "Hey. Don't you know I'm very fragile???". I laughed out loud. "Fragile" is not a word I ever use to describe Bram, so I'm guessing he picked this word up from his kindergarten teacher. I suspect she uses the word when the other students get too rough, and Bram has a genuine knack for picking up impressive vocabulary (let's not forget that he's only five). He routinely makes people laugh with the words he uses (uses correctly, might I add). Vocabulary was one of the intelligence areas where he scored in the high range. Isn't it a shame they don't test comedic timing? :o)
Well, that's about it for this installment of Bram's blog. I hope everyone is having a wonderful 2012. I will be sure to update again this summer. Bram's next MRI is in July, so be sure to check back during that month. We could definitely use your thoughts and prayers - as always. And as always, they are greatly appreciated.
Saturday, March 17, 2012
Get ready; get set; GROW!
We're covered for the next six months as I've just paid our deductible and some of the out-of-pocket costs with our tax return; however, our insurance year starts over in September, and that is going to present some financial challenges. It's not a big deal to rack up a hospital bill and then plan to pay it off once you get your tax return, but pharmacies don't offer you that option; they expect you to pay for the drug when they give it to you. I'm looking into some co-pay assistance organizations. Nutropin (one of the HGH drug companies) actually has a referral program in place for co-pay assistance, so we're not the only people in this boat. We'll work it out somehow.
That's it for this update. Bram and I have two days left of spring break, and we plan on enjoying those days.
As always, thank you for all of the prayers and support.
Alayne (Bram's Mom)
Tuesday, March 13, 2012
A hospital visit and a new dog
We have had a very busy month. A couple of weeks ago, Bram caught the latest stomach virus going around. My dad kept him home with him while I went to work. The virus only lasted a few days, but it left Bram dehydrated. Since I had had little success getting Bram to drink the fluids he needed, I was getting ready to take him to Children's ER for some IV fluids when an ambulance showed up at my dad's house next door. My stepsister ran over to let me know that the ambulance was taking my dad to the Greenville hospital. It looked like my dad had caught Bram's virus - but it had hit him a lot harder.
Bram and I headed up to Greenville hospital instead of Children's. Bram ended up getting fluids in ER room 9 while my dad was being treated in room 1. Bram responded really well to the fluids and started feeling better after only a 200 ml drip. My dad, however, needed to be admitted. He was released after three days but still needed a few more days to truly feel better. He is now fully recovered.
Two weeks later and spring break has arrived - just when we needed it most. Hooray!
Bram and I are really enjoying our time off from school. We just acquired a new dog/puppy today. She is ADORABLE. For those of you who may not have known, we took in a beautiful little puppy when we moved into our new house. We found him wandering the neighborhood street and had no luck finding his owner. We took him in and planned on keeping him. Unfortunately, he kept getting bigger and bigger. The vet told us that he was part Australian Shepherd. Apparently, he was also part Great Wooly Mammoth.
During the course of his puppyhood, Sully managed to do hundreds of dollars worth of damage around the house. Still, we knew it was a puppy phase and figured we could ride out the storm. Unfortunately, he just kept getting bigger and bigger. He was really too big for Bram and just too big for our house in general. We were keeping him penned up too much. I finally decided we needed to find him a new home that was prepared to take in a BIG dog and train him properly. We finally found him a home this weekend. Bram took the whole thing in stride. He had wanted Sully when he was a puppy, but had never really been able to play with him because Sully was so big he would knock Bram down. I had promised Bram we would get a smaller dog once we placed Sully with a family.
Well, yesterday, we found our new dog. She is a beautiful nine-month-old, spayed, obedience trained, housebroken (supposedly), pug/boxer mix. She is 21 pounds and about the height of our coffee table. She also looks like a larger version of our chihuahua/pug, Boo. We picked her up yesterday after Bram's procedure at Children's. Bram wants to call her Chewie (short for Chewbacca).
And that brings us to Bram's procedure at Children's yesterday. We arrived a little before 8:00 a.m. I had had a whopping one hour of sleep. Insomnia hit me hard Sunday night. A tear jerker movie threw my brain into worry overdrive and would not let me sleep. I let my fears about Bram's future overcome me. It's something that hits me once in a while, and when it does, I just have to ride it out. I'm all better now.
When we arrived, Bram had to have an IV placed in his hand. I was concerned because the IV placement at the Greenville hospital two weeks earlier had not been easy. After getting a vein finder (I forget the actual name of the special light used to help the nurse find the vein), the nurse still ended up having to move the needle back and forth under Bram's skin. It seemed to take her forever to "find" the vein. Bram did really well, but it hurt quite a bit.
Luckily, Children's is a completely different ball game when it comes to placing IVs in children. First of all, they used a J-Tip to numb the skin. It's a little air-powered device that shoots a numbing agent into the skin. After they used the J-Tip, I distracted Bram by showing him a light display out the window and across the interstate. We identified the changing colors of the display until the nurse was done. Bram didn't even realize that she had started placing the IV. He hadn't felt a thing. Hooray!
They administered the two drugs that were supposed to stimulate HGH production. One of them was L-Dopamine that can upset the stomach. I had asked for Phenergan for Bram. The nurse got the doctor to order it but wanted to wait to see if Bram would need it. Now, when Bram was going through treatment, this wouldn't have flown with me, but we've been out of treatment for almost three years now. I also had no experience with and consequently no expectation of the side effects of L-Dopamine. I didn't push the issue and just repeatedly asked Bram how he was feeling. He made it through the first 90 minutes or so with no problem.
Suddenly, he said he didn't feel well and immediately began throwing up. The nurse had left NOTHING for him to throw up into so he ended up throwing up on himself. Since the hospital had ordered nothing but water after midnight, poor Bram had nothing but stomach bile to throw up. I called the nurse but she was nowhere to be seen. I called out again, louder. Still nothing. She finally showed up TOO LATE with a container. I was a little upset. I took Bram to the bathroom to clean him up. I had to take off his pants and rinse them out. He was upset because he was stuck walking around in his underwear. I asked the nurse for some pants, but she said that they didn't have any. Now, we're regular visitors to the Pavillion at Children's Medical Center. I was well aware that there was an abundance of hospital pants in the building, if not in her actual department. I got Bram settled back into his chair and watching his movie. I then went downstairs to the lobby to explain what had happened so that I could get some patient pants. Having succeeded in my quest, I returned upstairs and put Bram in the hospital pants.
The nurse then told me that she had given Bram his Phenergan. I'm pretty sure the look I gave her was less than complimentary. I mean, he had already thrown up. The Phenergan was ordered so that he WOULDN'T throw up. I'm not sure he really needed it anymore, but maybe it kept him from throwing up again. As usual, it made him very groggy. We made it through the rest of the growth hormone study and headed out.
I made sure and thanked the nurses for everything, for despite the Phenergan fiasco, the day had gone rather smoothly. I was extremely pleased with the way they had placed and removed Bram's IV. The procedure was over, and Bram and I were on our way to pick up our new dog.
We stopped for some lunch at a little Greek restaurant in Carrollton. It has become our custom to get a gyro whenever we go to Dallas for a Children's appointment. Bram really loves them (as do I). We normally got to Kosta's, but since the puppy was in Lewisville, I had located a Greek restaurant in Carrollton. The gyro was pretty good, but I still have to say that Kosta's has the best gyro sandwiches in DFW. Anyway, Bram ate some much needed food and then we headed up to Lewisville.
We met the little dog and fell in love with her. After picking up the dog from Lewisville, we began the long drive home. The dog's previous owner said that she did great in the car, and she did - for the first 45 minutes, but Lewisville to Greenville is a long drive. Bram, who had fallen asleep in his car seat, suddenly called out, "Hey!" I looked back and saw him looking at his arm and pointing to the dog. I thought the dog had simply licked him and woken him up. It turned out that the dog had thrown up on him. Poor Bram. First he throws up on himself and then the dog throws up on him - all in one day. Luckily, it was just a treat that the dog had recently eaten, so it wasn't completely disgusting. I pulled over, cleaned up the mess, and moved the dog up to the front seat with me.
The remainder of our trip was uneventful. We made it home and introduced the new dog to Boo. At first, she wasn't super excited about the intruder to her domain, but she now seems to be accepting Chewie. She even seemed tempted to play with her at one point. I think she's going to warm up to Chewie, and they'll become fast friends.
Well, that's about it for the update. I'll try and update more frequently so that the entries are shorter. I'll be sure to update the blog as soon as we get the results from the HGH study.
As always, thank you for your prayers and support.
Alayne (Bram's Mom)
Saturday, February 18, 2012
The Tooth Fairy Visits Our House
I'm sorry it has been so long since my last update. School has kept me very busy and will continue to do so until April. Oh well.
We had a major event at our house over Christmas break. Bram's front bottom tooth started wiggling in December. On December 28th, while we were in the endocrinologist's waiting room, his tooth fell out. My little boy had lost his first tooth. We placed the tooth under the pillow that night and he awoke the next morning to discover five gold dollar coins under his pillow. The Tooth Fairy was very good to him.
Bram then lost his second tooth a few weeks ago. I explained to him that the Tooth Fairy would probably not leave quite as much for his subsequent lost teeth, that she leaves an extra large reward for the first tooth. Sure enough, he woke up to discover two gold dollar coins under his pillow. He was still very happy. His new teeth are starting to come through. One of them is a bit crooked, but I'm just thrilled that he has teeth to replace his baby ones. One side effect of radiation to the head can be a lack of adult teeth formation.
Back to Bram's trip to the endocrinologist. Bram will be undergoing a three hour hormone study on March 12th. They will hook him up to an I.V. and then give him a two drug cocktail that stimulates the release of HGH (human growth hormone). They will then take blood samples every half hour to check his HGH levels. If the test reveals what the doctor expects, Bram will soon be starting HGH shots to help him grow.
It is not an ideal situation. I've been researching HGH and cancer. From what I've read, there is no evidence that HGH increases the risk of a return of the original tumor; however, there is some evidence that HGH slightly increases the risk of a secondary tumor. The two types of secondary brain tumors that tend to occur are meningiomas and gliomas. The protocol for dealing with meningiomas is brain surgery. You remove the tumor and it doesn't come back. Gliomas, however, are fast growing and keep coming back. No good cure exists. They are fatal. Fortunately, the increased risk is small.
I have had many sleepless nights wrestling with the question of HGH therapy. If Bram doesn't receive it, he will not reach anything close to average height. At first, I was opposed to any increased risk; however, I have to weigh my fears with his desires to be like his peers. He is only in kindergarten but his small stature is already bothering him. He wants to be bigger and faster like his friends.
If the HGH screening returns the expected results, Bram will begin receive a shot HGH once a day, six days a week. The treatment will continue through puberty. I was also told that once Bram stops growing (hits adulthood), he will still probably need some lower dose of HGH in order to feel good/normal. The doctor said that it is similar to an insulin shot; he called it painless. We'll know more in March.
For now, Bram is in good health and is as cute as ever. He has discovered (thanks to an introduction by Mommy) the wonder of Star Wars and has started collecting the Imaginext Star Wars toys. He is doing well in school ( he has started reading, writing, and adding) and is a very happy little boy. He continues to make me laugh on a daily basis. I need to get back to writing down the things he says so that I can post it here on the blog. I should be able to do that again once things slow down in April.
I hope you are all doing well. Thank you for following Bram's progress.
Your prayers and support are very much appreciated - as always.
Alayne
We had a major event at our house over Christmas break. Bram's front bottom tooth started wiggling in December. On December 28th, while we were in the endocrinologist's waiting room, his tooth fell out. My little boy had lost his first tooth. We placed the tooth under the pillow that night and he awoke the next morning to discover five gold dollar coins under his pillow. The Tooth Fairy was very good to him.
Bram then lost his second tooth a few weeks ago. I explained to him that the Tooth Fairy would probably not leave quite as much for his subsequent lost teeth, that she leaves an extra large reward for the first tooth. Sure enough, he woke up to discover two gold dollar coins under his pillow. He was still very happy. His new teeth are starting to come through. One of them is a bit crooked, but I'm just thrilled that he has teeth to replace his baby ones. One side effect of radiation to the head can be a lack of adult teeth formation.
Back to Bram's trip to the endocrinologist. Bram will be undergoing a three hour hormone study on March 12th. They will hook him up to an I.V. and then give him a two drug cocktail that stimulates the release of HGH (human growth hormone). They will then take blood samples every half hour to check his HGH levels. If the test reveals what the doctor expects, Bram will soon be starting HGH shots to help him grow.
It is not an ideal situation. I've been researching HGH and cancer. From what I've read, there is no evidence that HGH increases the risk of a return of the original tumor; however, there is some evidence that HGH slightly increases the risk of a secondary tumor. The two types of secondary brain tumors that tend to occur are meningiomas and gliomas. The protocol for dealing with meningiomas is brain surgery. You remove the tumor and it doesn't come back. Gliomas, however, are fast growing and keep coming back. No good cure exists. They are fatal. Fortunately, the increased risk is small.
I have had many sleepless nights wrestling with the question of HGH therapy. If Bram doesn't receive it, he will not reach anything close to average height. At first, I was opposed to any increased risk; however, I have to weigh my fears with his desires to be like his peers. He is only in kindergarten but his small stature is already bothering him. He wants to be bigger and faster like his friends.
If the HGH screening returns the expected results, Bram will begin receive a shot HGH once a day, six days a week. The treatment will continue through puberty. I was also told that once Bram stops growing (hits adulthood), he will still probably need some lower dose of HGH in order to feel good/normal. The doctor said that it is similar to an insulin shot; he called it painless. We'll know more in March.
For now, Bram is in good health and is as cute as ever. He has discovered (thanks to an introduction by Mommy) the wonder of Star Wars and has started collecting the Imaginext Star Wars toys. He is doing well in school ( he has started reading, writing, and adding) and is a very happy little boy. He continues to make me laugh on a daily basis. I need to get back to writing down the things he says so that I can post it here on the blog. I should be able to do that again once things slow down in April.
I hope you are all doing well. Thank you for following Bram's progress.
Your prayers and support are very much appreciated - as always.
Alayne
Saturday, January 7, 2012
Another clear MRI for Bram!
I apologize for my absence from this blog. School and the Christmas holidays have kept us pretty busy. I wanted to update the blog to let you know that Bram had his MRI on Thursday, January 5th, and it came back clear again. No evidence of disease! His next MRI will be July 5th. We still have a couple more appointments at Children's before then.
We saw an endocrinologist last week. After researching HGH and talking to the endocrinologist and the oncologist, I've decided to go ahead and start Bram on HGH injections. They first have to do an HGH study. It entails Bram being hooked up to an I.V. for three hours. They will then give him two drugs that stimulate the pituitary gland to release HGH. Blood will be taken at thirty minute intervals so that they can get an accurate picture of his HGH production. The endocrinologist is expecting Bram's output to be very low. Basing his calculations on parental height, the doctor says Bram is five inches shorter than his expected height for his age. Radiation to the brain typically damages the pituitary gland and causes HGH deficiency. Bram's HGH study is scheduled for March 12th.
Bram also has an appointment on January 18th with the ENT and the audiologist due to a perforated right ear drum. We have no idea how the perforation occurred. Bram has not complained of any ear pain at all. He has started saying, "What?" a little more frequently. At this time, we're not sure if it's due to the perforated ear or just him being a boy. I know my brother Bill can relate to that statement. I recall him driving my mother to distraction with his constant "What?" response to anything my mother said to him when he was a child/teenager. :o) The appointment with the audiologist should clarify whether we dealing with hearing loss or a simple case of XY sex chromosomes.
We had a wonderful Christmas break. We had a chance to drive over to Shreveport to meet Bram's new cousin Roger, my niece's new baby. Bram also got a chance to play with his "old" cousins Joel and Travis. I got to visit with my sister, niece, and nephew-in-law (?). It was a very nice visit.
Bram had an excellent Christmas break. He got to see Santa numerous times between Thanksgiving and Christmas. He also got a chance to spend lots of time with Papaw and Cousin Brandon. He even got to spend time with Granny when she wasn't working. Once Bram wore everyone else out, I got my chance to spend time with him. We had tons of fun playing with his toys together. I believe some of his favorites were his train set, race car track, a new Fisher Price zoo, his pink Doodle Bear, his Moon Dough play sets, and his Star Wars action set. He also loved the pink bean bag chair that Santa brought him.
We also had a fun-filled Thanksgiving break. We had our Thanksgiving dinner on Tuesday and then headed out to San Antonio on the Wednesday. We spent Thanksgiving at Sea World (and now have free admission for all of 2012. YAY!) and Friday at Fiesta Texas. Bram loved both. He really enjoyed feeding the dolphins at Sea World. However, the amount of money we spent on food for the dolphins makes me think we should do the dolphin encounter next time so that he can actually touch one. He also really loved the Scooby Doo ride at Fiesta Texas. It's a dark ride where you ride through a haunted mansion and shoot at ghosts and monsters (similar to the Buzz Lightyear Ride at Disneyland and WDW).
Since the house purchase has left us pretty strapped, we won't be able to afford a trip to Disneyland this summer. However, I'm hopeful that we'll be able to swing a trip down to San Antonio with visits to Sea World (free), Fiesta Texas (free if we buy a Six Flags season pass again), the San Antonio Zoo (half price with our Tyler Zoo membership), the S.A. Children's Museum, the Alamo, and the Riverwalk. Maybe we can even make it over to Galveston for a little sun and sand. Bram loves playing in the sand. We're also hoping to take a trip out to Georgia for a visit with my brother Bill and his wife Margaret. We haven't seen Bill in a while and Margaret has yet to meet Bram. I'm sure we'll also make stops in Alabama to visit with my aunts, uncles, and numerous cousins. However, our first act of the summer will be swimming lessons for Bram.
Well, I have to go for now. Bram is ready to get up so my writing time has come to an end. I'll post another entry soon.
As always, thank you for all your prayers, thoughts, and support. I hope everyone has a healthy and happy 2012!
We saw an endocrinologist last week. After researching HGH and talking to the endocrinologist and the oncologist, I've decided to go ahead and start Bram on HGH injections. They first have to do an HGH study. It entails Bram being hooked up to an I.V. for three hours. They will then give him two drugs that stimulate the pituitary gland to release HGH. Blood will be taken at thirty minute intervals so that they can get an accurate picture of his HGH production. The endocrinologist is expecting Bram's output to be very low. Basing his calculations on parental height, the doctor says Bram is five inches shorter than his expected height for his age. Radiation to the brain typically damages the pituitary gland and causes HGH deficiency. Bram's HGH study is scheduled for March 12th.
Bram also has an appointment on January 18th with the ENT and the audiologist due to a perforated right ear drum. We have no idea how the perforation occurred. Bram has not complained of any ear pain at all. He has started saying, "What?" a little more frequently. At this time, we're not sure if it's due to the perforated ear or just him being a boy. I know my brother Bill can relate to that statement. I recall him driving my mother to distraction with his constant "What?" response to anything my mother said to him when he was a child/teenager. :o) The appointment with the audiologist should clarify whether we dealing with hearing loss or a simple case of XY sex chromosomes.
We had a wonderful Christmas break. We had a chance to drive over to Shreveport to meet Bram's new cousin Roger, my niece's new baby. Bram also got a chance to play with his "old" cousins Joel and Travis. I got to visit with my sister, niece, and nephew-in-law (?). It was a very nice visit.
Bram had an excellent Christmas break. He got to see Santa numerous times between Thanksgiving and Christmas. He also got a chance to spend lots of time with Papaw and Cousin Brandon. He even got to spend time with Granny when she wasn't working. Once Bram wore everyone else out, I got my chance to spend time with him. We had tons of fun playing with his toys together. I believe some of his favorites were his train set, race car track, a new Fisher Price zoo, his pink Doodle Bear, his Moon Dough play sets, and his Star Wars action set. He also loved the pink bean bag chair that Santa brought him.
We also had a fun-filled Thanksgiving break. We had our Thanksgiving dinner on Tuesday and then headed out to San Antonio on the Wednesday. We spent Thanksgiving at Sea World (and now have free admission for all of 2012. YAY!) and Friday at Fiesta Texas. Bram loved both. He really enjoyed feeding the dolphins at Sea World. However, the amount of money we spent on food for the dolphins makes me think we should do the dolphin encounter next time so that he can actually touch one. He also really loved the Scooby Doo ride at Fiesta Texas. It's a dark ride where you ride through a haunted mansion and shoot at ghosts and monsters (similar to the Buzz Lightyear Ride at Disneyland and WDW).
Since the house purchase has left us pretty strapped, we won't be able to afford a trip to Disneyland this summer. However, I'm hopeful that we'll be able to swing a trip down to San Antonio with visits to Sea World (free), Fiesta Texas (free if we buy a Six Flags season pass again), the San Antonio Zoo (half price with our Tyler Zoo membership), the S.A. Children's Museum, the Alamo, and the Riverwalk. Maybe we can even make it over to Galveston for a little sun and sand. Bram loves playing in the sand. We're also hoping to take a trip out to Georgia for a visit with my brother Bill and his wife Margaret. We haven't seen Bill in a while and Margaret has yet to meet Bram. I'm sure we'll also make stops in Alabama to visit with my aunts, uncles, and numerous cousins. However, our first act of the summer will be swimming lessons for Bram.
Well, I have to go for now. Bram is ready to get up so my writing time has come to an end. I'll post another entry soon.
As always, thank you for all your prayers, thoughts, and support. I hope everyone has a healthy and happy 2012!
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