On Wednesday Daylon had his appointment with the Ear Nose and Throat doctor. He looked over the information from the audiologist and then looked at Daylon's ears and confirmed that his tubes are no longer functional and that he still needs them. He said that they are not working and that there is a lot of thick mucus behind Daylon's ear drum so in his words, "Well, my little friend, I hate to tell you this, but we have to do this again. We are going to have to do another surgery and get you some new tubes in." I just love how he calls Daylon his little friend. It is always "my friend, or my little friend" LOL!! He is a wonderful doctor and is absolutely wonderful with the kids. So, now we are scheduled for surgery on October 7th for new tubes.
After his surgery I will have to wait a couple of weeks and then get him another appointment with the audiologist to make sure that the new tubes have helped with the hearing issues.
His next endocrinologist appointment has been changed to November 4th. I can't wait for that appointment to be able to see how well he really is doing. At our last appointment he was 31 1/8 inches, which was almost 1/2 an inch in two weeks, and she measured him twice!!
Update on my new business adventure: So far we have raised $64.40 for Jason and $35.60 for MAGIC!!!! It may not seem like a lot but every little bit helps.
Sunday, September 26, 2010
Tuesday, September 7, 2010
Child Development Screen
Today we took Daylon and Andraya to a child development screening. Andraya did wonderful!! Passed everything with flying colors.
Daylon did well in everything except for the issues we were already aware of and he failed the hearing test. The tubes in his ears are not there anymore, or rather, one is in the ear canal and the other was not visible and both ears have fluid behind them. They referred us back to the ENT, and want to recheck his hearing in 4-6 weeks or 2 weeks after completion of the doctor's recommendations. She said it may just need antibiotics or another set of tubes, depending on what the doctor wants to do. So, we have an appointment with ENT on the 22nd. I am praying that this hearing loss is just temporary due to the fluid and that there's no permanent damage, we won't know for sure until after the recheck, although this does explain a lot about the speech delay!!
Daylon did well in everything except for the issues we were already aware of and he failed the hearing test. The tubes in his ears are not there anymore, or rather, one is in the ear canal and the other was not visible and both ears have fluid behind them. They referred us back to the ENT, and want to recheck his hearing in 4-6 weeks or 2 weeks after completion of the doctor's recommendations. She said it may just need antibiotics or another set of tubes, depending on what the doctor wants to do. So, we have an appointment with ENT on the 22nd. I am praying that this hearing loss is just temporary due to the fluid and that there's no permanent damage, we won't know for sure until after the recheck, although this does explain a lot about the speech delay!!
Monday, September 6, 2010
Update on the labs Dr. C ran for us.
All of the labs Dr. C ran for us came back within normal limits, except for the neutrophil count, which was low like it usually is, so I guess you could say it was normal for him. He always runs in the 500's for neutrophil counts and this one was 570.
He is still doing well with his shots. Occasionally he has a bad night, but those are usually when he is really overtired. I think he may be finally growing. He is almost into 24 month clothes!!! I am extremely excited about this, we are finally graduating up a size, we've been in 12-18 month clothes for 6 months now, although I will admit it's nice not to have to buy clothes all the time. LOL!!
He is still doing well with his shots. Occasionally he has a bad night, but those are usually when he is really overtired. I think he may be finally growing. He is almost into 24 month clothes!!! I am extremely excited about this, we are finally graduating up a size, we've been in 12-18 month clothes for 6 months now, although I will admit it's nice not to have to buy clothes all the time. LOL!!
I borrowed this from another special needs Mom.
Why Doesn't She Just... (written by "Michelle")
See her?
That mom over there?
Why doesn’t she just…
…Leave her baby in the nursery at church?
…Give it a rest with the hand sanitizer?
…Breastfeed?
Or that one — right over there — why doesn’t she just…
…Make her child behave?
…Stay home?
…Get a sitter?
What about that one — why doesn’t she just…
…Stop trying to put her child in with the “normal” kids?
Because she cannot — because she knows the nursery won’t pay close enough attention to her baby’s allergies, because her baby has reflux so severe it would break your heart if you really knew, because her baby has a skin condition and people say and think the cruelest things when they get a close look, because she’s the only one that knows how to care for her baby’s trach, g-tube, medical condition — she and her family are the only ones who are able.
Because she knows it’s worth the risk of offending someone by offering a bottle of hand sanitizer. Because she knows that her baby is only one well-meant cuddle away from another three-month stay in the NICU.
Because breastfeeding isn’t always as simple as it sounds. Because hours and hours of sleepless nights and stressful tears while her child’s life hung in the balance have ravaged her body to the point that it has nothing more it can give — no matter how much she wishes it were otherwise. Because the dream of nursing her own child died while her baby struggled to survive with the help of ventilators, trachs, feeding tubes. Because she won a hard fight against breast cancer. Because her child cannot or will not eat, leaving her to plan for future therapy, the next surgery, the next specialist appointment — while she searches for answers, diagnoses, treatments.
Because bad behavior isn’t always synonymous with bad parenting or spoiled children. Because she’s doing the best job possible in a challenging set of circumstances. Because her child has autism, asperger’s, touertte’s, down syndrome, schizophrenia, fetal alcohol syndrome — and after a full day of doctor and therapy appointments the stop at the grocery store just wasn’t optional — much as she wishes that it was. Because you just happen to be seeing her on one of the very worst days of her life.
Because she’s already stayed home for months. Because she deserves fresh air as much as the next person. Because her child does too. Because she’s working hard to give her child as many normal experiences as possible. Because others need to learn to be compassionate.
Because the possibility of a sitter isn’t a reality for everyone. Because she and her family are the only ones who know — the only ones who know how to calm her child down, how to give the injections, how to get her child to eat, what to do if her child seizes, how to vent her child’s G-tube, how to run her child’s feeding pump, how to flush her child’s port, how to change her child’s trach, how to assist her child to the bathroom, how to tell when it’s time to take her child to the ER or just time for a nap, she and her family are the only ones who know how to keep her child safe.
Because her child deserves a little bit of “normal” in this life too. Because her child, like every child deserves the best that can be given them. Because she sees the child when others see a disability. Because her child matters.
Because she’s right to teach her child to try, to aspire, to dream.
See her?
That mom over there?
Why doesn’t she just…
…Leave her baby in the nursery at church?
…Give it a rest with the hand sanitizer?
…Breastfeed?
Or that one — right over there — why doesn’t she just…
…Make her child behave?
…Stay home?
…Get a sitter?
What about that one — why doesn’t she just…
…Stop trying to put her child in with the “normal” kids?
Because she cannot — because she knows the nursery won’t pay close enough attention to her baby’s allergies, because her baby has reflux so severe it would break your heart if you really knew, because her baby has a skin condition and people say and think the cruelest things when they get a close look, because she’s the only one that knows how to care for her baby’s trach, g-tube, medical condition — she and her family are the only ones who are able.
Because she knows it’s worth the risk of offending someone by offering a bottle of hand sanitizer. Because she knows that her baby is only one well-meant cuddle away from another three-month stay in the NICU.
Because breastfeeding isn’t always as simple as it sounds. Because hours and hours of sleepless nights and stressful tears while her child’s life hung in the balance have ravaged her body to the point that it has nothing more it can give — no matter how much she wishes it were otherwise. Because the dream of nursing her own child died while her baby struggled to survive with the help of ventilators, trachs, feeding tubes. Because she won a hard fight against breast cancer. Because her child cannot or will not eat, leaving her to plan for future therapy, the next surgery, the next specialist appointment — while she searches for answers, diagnoses, treatments.
Because bad behavior isn’t always synonymous with bad parenting or spoiled children. Because she’s doing the best job possible in a challenging set of circumstances. Because her child has autism, asperger’s, touertte’s, down syndrome, schizophrenia, fetal alcohol syndrome — and after a full day of doctor and therapy appointments the stop at the grocery store just wasn’t optional — much as she wishes that it was. Because you just happen to be seeing her on one of the very worst days of her life.
Because she’s already stayed home for months. Because she deserves fresh air as much as the next person. Because her child does too. Because she’s working hard to give her child as many normal experiences as possible. Because others need to learn to be compassionate.
Because the possibility of a sitter isn’t a reality for everyone. Because she and her family are the only ones who know — the only ones who know how to calm her child down, how to give the injections, how to get her child to eat, what to do if her child seizes, how to vent her child’s G-tube, how to run her child’s feeding pump, how to flush her child’s port, how to change her child’s trach, how to assist her child to the bathroom, how to tell when it’s time to take her child to the ER or just time for a nap, she and her family are the only ones who know how to keep her child safe.
Because her child deserves a little bit of “normal” in this life too. Because her child, like every child deserves the best that can be given them. Because she sees the child when others see a disability. Because her child matters.
Because she’s right to teach her child to try, to aspire, to dream.
Sunday, August 29, 2010
A quick update!
Sorry it has been so long since our last update!! Things have been crazy around here. Daylon has started speech once a week and is doing really well with it. Still isn't talking a whole lot at home but will rattle off a lot more words while at speech. I think he's just being stubborn and has two big sisters to talk for him at home.
I emailed all of Daylon's doctors not long after we returned from convention and most of them seem to be on board with using Dr. H's protocol. We saw his regular pediatrician about a week ago and asked him about ordering some of the tests that Dr. H recommends and he did. That was no fun at all, 4 little tubes of blood in one shot. He took it like a trooper though, like he always does. We still haven't gotten the results back, but I am very interested to hear what they are. I did ask the doctor about the metopic fusion that Dr. H commented on and he felt that it wasn't necessary to do any other testing for that and because it was only one area of the skull that fused too early there isn't a concern. What a relief to hear that!!
I have also talked with the hematologist in Great Falls and he wants to be included in Daylon's case whether it is just getting the results of all of the labs and seeing if he can find anything different than the others, or if he wants us to come up there periodically, it hasn't been decided yet.
I am not sure how to take Daylon's endocrinologist. I emailed him the same information I emailed all of the other doctors and the response I got from him was "Thank you. Give him a hug for me."
As far as the shots go, he is doing wonderful with them!!! He occasionally fusses and cries when it's time for the shot but right after it's done, he's off playing again like nothing happened. I am praying that they are working. We won't really be able to tell a whole lot until our appointment in October, unless the labs that Dr. C ordered for us show something different. He has grown since starting, but I'm not sure if it's due to the growth hormone or if it is growth on his own.
On a side note, I have started my own business with Thirty-One gifts!! I am extremely excited about this new adventure! Thirty-One is a Christian based company and the name itself is derived from Proverbs 31:10-31, The Virtuous Woman. Our mission is to Celebrate, Encourage, and Reward Women!! Part of my own mission with this is to help others. My plan is to donate 10% of party sales to either The MAGIC Foundation, or to my husband's cousin Jason and his family. Jason is fighting metastatic melanoma and had his fourth brain surgery on his 40th birthday. With every party booked, I will be asking the hostess if they want to do the show in honor of MAGIC or Jason and whichever they choose will get 10% of the party sales.
Thank you all for your support!!!
Jean
I emailed all of Daylon's doctors not long after we returned from convention and most of them seem to be on board with using Dr. H's protocol. We saw his regular pediatrician about a week ago and asked him about ordering some of the tests that Dr. H recommends and he did. That was no fun at all, 4 little tubes of blood in one shot. He took it like a trooper though, like he always does. We still haven't gotten the results back, but I am very interested to hear what they are. I did ask the doctor about the metopic fusion that Dr. H commented on and he felt that it wasn't necessary to do any other testing for that and because it was only one area of the skull that fused too early there isn't a concern. What a relief to hear that!!
I have also talked with the hematologist in Great Falls and he wants to be included in Daylon's case whether it is just getting the results of all of the labs and seeing if he can find anything different than the others, or if he wants us to come up there periodically, it hasn't been decided yet.
I am not sure how to take Daylon's endocrinologist. I emailed him the same information I emailed all of the other doctors and the response I got from him was "Thank you. Give him a hug for me."
As far as the shots go, he is doing wonderful with them!!! He occasionally fusses and cries when it's time for the shot but right after it's done, he's off playing again like nothing happened. I am praying that they are working. We won't really be able to tell a whole lot until our appointment in October, unless the labs that Dr. C ordered for us show something different. He has grown since starting, but I'm not sure if it's due to the growth hormone or if it is growth on his own.
On a side note, I have started my own business with Thirty-One gifts!! I am extremely excited about this new adventure! Thirty-One is a Christian based company and the name itself is derived from Proverbs 31:10-31, The Virtuous Woman. Our mission is to Celebrate, Encourage, and Reward Women!! Part of my own mission with this is to help others. My plan is to donate 10% of party sales to either The MAGIC Foundation, or to my husband's cousin Jason and his family. Jason is fighting metastatic melanoma and had his fourth brain surgery on his 40th birthday. With every party booked, I will be asking the hostess if they want to do the show in honor of MAGIC or Jason and whichever they choose will get 10% of the party sales.
Thank you all for your support!!!
Jean
Wednesday, July 28, 2010
We are home!!
We made it home yesterday afternoon and are recuperating from the long trip. I will be posting my notes from the classes we attended in the next few days. Daylon has his speech therapy evaluation on Friday and I will post details on that also. For those who have called I will give you a call as soon as I get things a little more in control here at home. Love to you all!!
Jean
Jean
Friday, July 23, 2010
We Made It!!
We made it to Wheeling on Thursday afternoon. Our hotel is amazing!! We also got to see Darryl Hall of Hall & Oates leaving as we were arriving. That was pretty exciting, to get to see a celebrity while we were here!
Day one was filled with driving, getting settled, and seeing three doctors. We saw Drs. Harbison and Netchine at 5:30, they confirmed Daylon's diagnosis of SGA. Dr. H also recommended looking at a couple of other hormone values including: IGF-1, IGFBP-3 (binding protein for insulin-like growth factor 1), and ALS (which is a carrier for both IGF-1 and IGFBP-3). All of these hormones play an important role in how growth hormone (both natural and synthetic) is utilized and manufactured by the body. We also saw Dr. Simmons (a pediatric orthodontist) who checked Daylon's teeth and said that they looked good with minimal crowding on the bottom and a decent gap on the top to allow for growth, but once his permanent teeth come in, he may need intervention.
Day two was filled with classroom time. Lots of information to consider and mull over, once I have a better understanding I will pass on to you all. I will say that there was alot of information and a lot to think about, along with some other possibilities that need to be considered. I also spoke with the Division Consultant for SGA with the MAGIC Foundation regarding our experiences with our current doctors and she gave me some good feedback to think about and promised some additional information within the next few weeks. All of this followed by an Amazing Dinner Party and Recognition of our MAGIC HERO, George Chmeil, who has raised over $100,000 for the MAGIC Foundation in the last two marathons he has run. To read more about George and his story, including all he has done for MAGIC, go to www.luciandgeorge.com.
Day one was filled with driving, getting settled, and seeing three doctors. We saw Drs. Harbison and Netchine at 5:30, they confirmed Daylon's diagnosis of SGA. Dr. H also recommended looking at a couple of other hormone values including: IGF-1, IGFBP-3 (binding protein for insulin-like growth factor 1), and ALS (which is a carrier for both IGF-1 and IGFBP-3). All of these hormones play an important role in how growth hormone (both natural and synthetic) is utilized and manufactured by the body. We also saw Dr. Simmons (a pediatric orthodontist) who checked Daylon's teeth and said that they looked good with minimal crowding on the bottom and a decent gap on the top to allow for growth, but once his permanent teeth come in, he may need intervention.
Day two was filled with classroom time. Lots of information to consider and mull over, once I have a better understanding I will pass on to you all. I will say that there was alot of information and a lot to think about, along with some other possibilities that need to be considered. I also spoke with the Division Consultant for SGA with the MAGIC Foundation regarding our experiences with our current doctors and she gave me some good feedback to think about and promised some additional information within the next few weeks. All of this followed by an Amazing Dinner Party and Recognition of our MAGIC HERO, George Chmeil, who has raised over $100,000 for the MAGIC Foundation in the last two marathons he has run. To read more about George and his story, including all he has done for MAGIC, go to www.luciandgeorge.com.
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