Sunday, November 21, 2010

New Endocrinologist

I called our new endocrinologist's office to get his take on waiting until January to see Daylon. He was not okay with that, he actually wanted to see him this month, but there was no way we could make it to Salt Lake. We had talked about going to Salt Lake in December, but our insurance would not cover him in Salt Lake, it will here, but not there. So, we will be going to Missoula sometime the week of January 10th-14th. I got the intake paperwork from the new doctor and my goodness it covers things that previous specialists have never asked before. All I can say is January should prove interesting.
I have also been asked by the SGA division coordinator for MAGIC to write our story for the next newsletter. I will be busy doing that for a while. Trying to put the last two and a half, almost three years on paper, should prove interesting. LOL!!

Wednesday, November 10, 2010

Update on Ears & New Doc

We had Daylon's ENT appointment today. His right ear looks great, but the left is still causing problems. It is still draining quite a bit so we are to continue with the ear drops 3 drops, 3 times a day until they stop draining and then continue for a week after that. He also made a recommendation that I had never heard of before, with him having such a yucky stuffy nose and draining green stuff, he wants us to use a tiny bit of neosporin inside both nostrils once a day for a month. He said that the vaseline will melt and the oil will carry the antibiotic through the sinus cavities & down the eustacian tubes, apparently this helps a lot with some kids with the infections there. He wants to try to keep him off all of the oral antibiotics as much as possible and wants to see him again in January, unless there are more issues then he wants to see him before then.

Dr. C called me this morning to ask about the endocrinology situation. He wanted to know if MAGIC knew of any endos in our area that follow the same protocol as Dr. H. I told him that I had made a few calls to the two doctors that come to Montana and that it sounds like Dr. S follows the same protocol. He let me know that they would give me a referral to any doctor that I wanted to see, and agreed to send a referral to Dr. S. He also commented that he did not know that Dr. S still came to Montana, so it sounds like he may be familiar with him. So hopefully we will be going to Missoula in January to see him, unless he wants to see us sooner than that, then we will have to go to Utah to see him.

Tuesday, November 9, 2010

Pictures that I promised you from D's surgery

Waiting for surgery and playing with the camera they gave him.

The tubes that were taken out of D's ears.

Another Shot of the tubes.

Playing with his gloves, hanging out in pre-op.

What Daddy & Sister were doing while we waited.

Just watching a little TV.

Another Update

I can't wait until Wednesday when we see Dr. Butler again on Daylon's ears. They have not stopped bothering him at all and the left started really draining last Thursday and is still draining. This is after a round of Cephalexin and the continuous Neomycin, hydro-cortisone drops.

On the Endocrinology front, it's a long story. We were not able to see Dr. K on the 4th due to a death in the family. We did reschedule for January 5th, but will most likely be canceling that appointment because circumstances as they are, and have been with Dr. K, we feel that a change in care is needed.

We researched the other two doctors that come to Montana and called both of their offices to get as much information as we can. We have found a doctor that requires that he sees the patient every 3 months while on growth hormone and is familiar with treating RSS/SGA patients. His treatment protocol sounds much like Dr. H's, which I am very excited about!! I called Dr. C's office to see about getting the referral. I am hoping he will give us the referral, if so we will be headed to Missoula to see Dr. S from Utah in January and every 3 months after that. It sounds like the one in Great Falls is not taking new patients and will be closing his practice.

Update 11/9/10 @ 1:30pm

I did talk to the Great Falls office and that doctor is accepting new patients but will not be back in Montana until March. This is too long to wait for a change in care.
Daylon's ears have been really bugging him today, so it is a very good thing that we will be seeing Dr. Butler tomorrow.

Friday, October 8, 2010

Update on Daylon's Surgery

Daylon is doing well. His surgery went really well for the most part. We got there at 6:45 am and were back in a pre-op room by 7:00am. We tested his blood sugar and it was at 95, so we were happy with that. With the quick surgeries like this they do not run an IV, they just do the gas to put them under, because it is usually only a 15 minute or so procedure. At 7:45, Daylon headed back to the OR and Shawn headed off to take Alexis to school. I went and waited in the waiting room. I was beginning to get a little nervous when I noticed that it was 8:15 and Dr. hadn't come out to talk to us yet, when here he came. The first words he said to me were, "As usual, nothing is ever easy with Daylon." He went on to tell me that Daylon was fine, but he is very concerned about his left ear. He said that there is a lot of granulation tissue behind the left ear drum and that he put a tube in but is not sure it will work. So, he gave us ear drops and strict orders to use them for 4-6 weeks and see him for a follow-up at that point. So, now we are praying that the drops work and dissolve the granulation tissue. If they don't we will have to go back for another surgery where this time they will actually lift the eardrum, scrape out all of the granulation tissue and then replace the eardrum. Apparently both tubes were present, just not functional, because he gave them to me in a little container. Thank you all for your thoughts and prayers.
Love you all,

Sunday, September 26, 2010

Surgery is scheduled.

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.

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!!

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!!

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?

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!!!


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!!

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

Sunday, July 18, 2010

What a Week!!

This last week has gone by surprisingly fast. We have been packing today. We got the girls ready for their trip to Gramma's house and they will be heading out soon. :-( I am going to miss those two little boogers!!
Tomorrow Auntie will come over and we will figure out how we are going to get everything loaded into the car and get it loaded so Tuesday morning all we have to do is jump in and go bright and early at 6am.
Our plan is to get as far as Mitchell, SD on Tuesday night, then leave there Wednesday morning for Preston, MN. We will stay in Preston with a friend of mine and head on to the convention on Thursday.
I can't even begin to tell you how excited I am!!! I can't wait to meet Dr. H and everyone that I have networked with from the MAGIC Foundation. It should be a wonderful time!
I will try to update you all as we go through our journey to get to Chicago and how we are doing along the way! Thank you all for your support!

Monday, July 12, 2010


This last week has gone amazingly well for Daylon with his shots. He is no longer giving me the guilt trip every time I pull out the case for the Humatropen, before as soon as he saw the green case he'd start walking around saying "Ow, ow, ow." I think he has realized that this is just part of the day to day routine and I am getting better at giving it and finding a spot that doesn't hurt. Which can be hard when it is supposed to be subcutaneous and the little man has very little fat on his body. We went to the doctor on Wednesday for a followup on his hand, which he burned on the 4th, and weighed and measured him. He is 30.25 inches long and 21 lbs. 6 oz. and his hand looks wonderful!!
ONE WEEK until we leave for MAGIC Convention!! I am so excited!!!!! We received a Parent Training Scholarship from PLUK (Parents Lets Unite for Kids) for $700. This scholarship is on a reimbursement basis, so we will pay for our gas and things and they will reimburse us when we send our paperwork in. I am waiting to hear back from Chase Hawks Memorial Association to see if we received a grant from them. I just talked to my aunt & I think we are going to take her car instead of our Jeep. We will get much better gas mileage that way!! If you can help at all it would greatly be appreciated and I will be sending out tokens of our appreciation to those who have already donated. Thank you so much for all of your help. If you would like to donate but do not want to use paypal you can email me and I will get back to you as soon as possible with our contact info.

Monday, July 5, 2010

Only Fifteen Days!!

Only fifteen more days until we leave for MAGIC Convention!! Shawn is going to stay home and work so my aunt is going to come with us!! I am so excited! I have a few applications out for funding, hoping to hear back from them soon. Please pray with us that funding comes through so we are able to go.
This means so much for Daylon & us. This is NOT a vacation to Chicago. This is our opportunity to learn more about what all of this means for Daylon and what we can do to help him. Our itinerary is packed full of education and training. Thursday we have our appointments with Dr. H and Dr. Simmons. We will be able to confirm his diagnosis and make sure we are on the right path for him. We will also be learning about his disorder and the best way to treat it. Friday from 9:00 to 10:30 we have "Treating RSS/SGA", from 10:45 to 12:00 "Not Just About Stature", from 1:00 to 2:30 "Genetics and Epigenetics of RSS: Yes! We CAN Understand!", 2:45 to 4:00 either "The Mystery of IGFD" or "Results of MAGIC's RSS Genetic/Epigenetic Study" and finish out the day from 4:00 to 5:00 with "Ask the Doctors" and at 6:30 dinner to honor George Chmiel, Jr. who has ran two marathons in support of children with growth disorders. Saturday we will have from 9:00 to 10:15 "Seven Strategies for Supporting Siblings" and "Gendocrinology: The Science of Genetics and Hormones for Non-Doctors" and from 12:00 to 1:00 "It's OK to Dream! with George Chmiel". Saturday afternoon we will be able to go to Navy Pier to walk around and have a little free time and Sunday before we leave is MAGIC's Annual Meeting. So as you can see it will be a very full, educational weekend!!

Friday, July 2, 2010

Going so much better!

The last two nights have gone 100% better than the nights previously. Night before last I decided to try giving it in his bottom. He said Owe before I even got to him with the pen device. Then didn't say a word or make one sound when I actually gave it to him. Silly boy!!

Wednesday, June 30, 2010

Much Better!

Tonight went so much better! I decided to go ahead and give it in his bum instead of the leg. I had been afraid to because he is still in diapers and with the neutropenia, didn't want to end up with infection.

Tuesday, June 29, 2010

Day 6, Fifth Dose!

First, we had our evaluation with STEP (Early Intervention) today. This was the third evaluation they've done and he has never been far enough behind to qualify for services. That is, until today. His communication scored at 16 months and physical scored at 18 months, so he has two areas with a 25% delay, and we will be going forward with a plan of action next week.
Tonight's injection didn't go so well. I decided to try using the needle guard to see if that helped. Nope!! Not at all! I actually think it made it worse. I am not even sure he got the dose and the needle was bent to almost a 90 degree angle. Definitely NOT doing that again!! Much easier when you can actually see the needle and make sure you have it where it is supposed to be while giving the medication. Then, I went to put the needle cover back on (like they showed me) and it stuck through the cover and poked my finger. Now, that one actually did hurt!!
When I told Shawn about it he laughed at me and told me that a little growth hormone wouldn't hurt me any. :-( LOL!! Stinker!!
That's our news for today. Hoping tomorrow's injection goes much smoother than tonights. Praying that this gets easier!! They say it does, and I believe it will as long as I continue to remind myself that I can do this and it is something he needs.

Change of Plans!! So Excited!!

So, we have decided to drive instead of fly to Chicago. We will stay with friends and family along the way. It will be so much cheaper to drive rather than fly, and with driving we are already almost half way there to having enough to pay for our gas. YAY!!! Now we know that we are definitely going. We were looking at about $1500 for plane tickets and we can drive for about $800 or so. That's figuring the lowest possible gas mileage and adding about 500 miles onto each end of the trip. I am going to talk to a couple of the agencies around town to see if they can help us out.
Daylon did really well with his shot last night, a couple whimpers and he was fine. He has an evaluation with STeP today to go over his speech development again. He still only uses probably 10 words consistently and knows probably 30 words, when he wants to use them. I will let you know what we find out.

Saturday, June 26, 2010

Day 2-4 of Growth Hormone

Daylon is being such a champ with this. He had his injection last night and cried a little bit, but he also kicked his leg out when I gave it, which bent the tiny little needle, but when you are dealing with a 31 guage needle that is not hard to do. So all in all, we are off to a great start.
Saturday, day 3, went well. No bent needle and only a few tears.
Sundays are his days off from shots. He only gets them six nights a week.

Thursday, June 24, 2010

A Fabulous Day!!

What an exciting day at our house!!
We got our Dr. H time slot! We will see her the first day of convention at 5:45pm. They will email me a spreadsheet to fill in with Daylon's measurements since birth (I think). I plan on sending his lab work along with that too. It will be so interesting to get Dr. H's opinion and thoughts.
And the most exciting news of all!! We had our training session this afternoon for the Humatrope and Daylon got his first dose today! We learned how to mix the medication and prime the pen device. The nurse also had us stick ourselves with an empty syringe that had the same gauge of needle on it, just so we knew how it feels. It is only a 31 gauge needle, so very tiny. They actually call it the invisible needle and it really doesn't hurt. There was a little sting after pulling the needle out, but not bad. Although, I will admit that I don't know whether or not the medication stings. I don't think it does though, because Daylon only whimpered right after I stuck him with the needle. No tears at all!! What a big boy! Praying this is our answer, not only for the growth but the other medical issues as well!
Please keep praying with us that funding comes through for our flight to Chicago! We appreciate you all so much!! Thank you for everything you have done!
Love & Prayers,

Wednesday, June 23, 2010

Lots of Updates

Sorry it has been so long since our last update we had family in town last week and were very busy visiting.

The not so great news:
I have not heard back yet on our appointment with Dr. H.

The wonderful news:
HRC called us last Thursday to let us know that our insurance approved Daylon's Humatrope and to set up shipment. We received his Humatrope on Tuesday and we are now waiting for our appointment with the trainer. We are tentatively set up for training tomorrow afternoon at 4:00pm. There is a possibility that she could squeeze us in to her schedule today.
We had a family reunion this past weekend and received $300 in donations towards our MAGIC trip!!!!

Interesting tidbit:
We got to visit with my mom and sisters from Houston this past week. Which also means we got to see our nieces that we haven't seen in almost two years and the youngest we had never met. We have three, two of which are very close to Daylon's age. One is three days older and the other is five months younger. Daylon reaches the one who is three days older at the shoulder, and the one who is five months younger is probably five to six inches taller than him.

I want to thank all of our supporters and followers for all of their prayers and encouraging words as we go through this adventure.

Tuesday, June 8, 2010

A Little Bit of News

We got our registration all in for MAGIC, and got our letter yesterday giving us our confirmation and the time slot to meet with Dr. Simmons (the dentist). I found a number for an agency that may be able to help us offset some of the cost of the airline tickets, but I am waiting to hear back on our appointment time with Dr. H to schedule it. It sounds like it will be in the evening sometime. I will be calling the airlines here in a little bit to get an idea of what we can do. I am also looking for ideas for local fundraisers that we can do. Thanks for any input.

We are still waitng to hear from the drug company so we can start Daylon's growth hormone. Hoping that all goes through soon, so we can get started on it.

Wednesday, June 2, 2010

We Got the Scholarship!!!

I just got an email from MAGIC!! We got the scholarship!!!!! YAY!!!!! Now we just have to raise the money for the plane tickets to get there. On Travelocity right now, they are right around $512 per person. Well, off to sign our acceptance letter and fill out the hotel reservation form, and get it back to them ASAP!! We have to get it in soon so we can get a slot with Dr. H. I can't wait!!
Oh I almost forgot! I found this really cool widget for donations on a friend of mine's adoption blog (THANKS ASHLI!!) that shows how much we have raised so far, so I switched to it so everyone can see our progress as time goes on!!

Tuesday, June 1, 2010

The Why....

Some of you may be wondering why we are going to put our son on growth hormones when we have no concrete proof that it will help him.
My questions to you are:
Have you been in my shoes?
Have you ever been asked how old your child is and then when you tell them, get the really, he's soooo tiny comment and the look that says do you feed that child?
Have you ever been in the pedi's office and see a cute bubbly little girl about the size of your son only to find she's 10 months old while he is 23 months old?
Do you know what it's like to lie awake at night wondering what you are doing wrong? Why is my baby not growing? Why is he not eating like the others did? What am I doing wrong?
Do you know what it's like to constantly worry about what little cold is going around now, because your child's immune system has a hard time fighting things off?
Do you know what it is like to hear everyone say, "Oh he'll catch up. He's fine." when you know in your heart that something is not right?
You start to internalize everything. No it is not my fault that my child is small.
So the why, Why not? Why not do everything in my power to help my son? Why not?

Thursday, May 27, 2010


Did I ever mention how much I hate waiting?
We got our scholarship application in yesterday, so now we wait to hear back on that. The good news is in the meantime we are working on getting a time slot for a consultation with Dr. H. The leading specialist in the field of RSS/SGA. I am so excited about this!!! I can not wait to meet with Dr. H and see what her opinion is on D.
Today, I called all of Daylon's doctor's to get copies of his medical records to take with us. I also called Shodair to see what all they tested for when they did the genetic testing last fall. All they checked on was 22q deletion and to make sure he had the right number of chromosomes etc. So, I asked them about running the tests for RSS just to make sure we aren't missing it. The genetic counselor is going to talk to the doctor and see what he thinks of testing the genetics that go along with RSS. They had decided in the beginning not to test him for it because he is symmetric. In other words, he does not have the obvious characteristics that some RSS children have. Either way the treatment would be the same. I just find it funny that several people we know have commented on how he reminds them of an RSS boy they took care of at one point and now we have the SGA diagnosis which is very similar to RSS, and then find out that it's never been ruled out. Guess we will see what happens.
Waiting for records. Waiting for HRC to call to get us set up with his meds. Waiting to hear back about the testing! Patience is not my strong point!!
You can find more information on RSS here.

Wednesday, May 26, 2010

The MAGIC Scholarship

I am so excited I am in the process of emailing over all of the information and the application for the MAGIC Convention Scholarship program. We are barely making the deadline. They wanted them in by no later than June 1st. Huge sigh of relief. As long as the computer doesn't act up we will be in good shape.

Tuesday, May 25, 2010

Growth Hormone Therapy: Not What You Think!

Growth hormone therapy is not what you think. It is NOT all about linear growth. We are not doing this just to make our son taller. We are doing this because growth hormone plays an important role in other functions of our body too. Yes a child may grow a couple inches on GHT but that doesn't show what has happened on the inside where the heart and lungs have become stronger and more efficient, so the child can breathe better. Growth hormone is the key to all cell growth and reproduction. You can find more information on this here.
If you were to think about it as though your child is not producing enough growth hormones or the hormones they are producing are inadequate what other cells in their little body are not growing as they should? So not only is the child short, but he may have other problems too. Lung issues, heart issues, bowel issues, you name it can all be affected by not having enough growth hormone.
It is no different than giving a child who is diabetic insulin because they can't produce it on their own. You would not think twice about whether or not to give the child insulin. Why should a parent of a child who is GHD or GH insufficient have to second guess themselves for giving their children something their body needs?

Starting Growth Hormone Therapy

We finally got a diagnosis for our little boy. He is SGA or Small for Gestational Age. So he will be put on Growth Hormone therapy for at least six months to see how he responds. If he responds well then we know that the growth hormone he produces on his own does not function properly. If he doesn't grow and get to feeling better, then we know we need to do more testing. It is possible that SGA may not be his final diagnosis. If he does not grow than we know that we need to do more testing on his IGF-1 levels.
So now we are waiting for the drug company to call us to set up shipment & training for our first months supply of Humatrope (HGH). Once we talk to them they will get it shipped out to us and will then start dealing with the insurance company to get approval.

The MAGIC Foundation

Daylon never caught up like I was told he would by the pediatricians. Everyone thought he would just take off and be back on the charts in no time, but he didn't. So I started looking into IUGR and other growth problems and stumbled across the MAGIC Foundation (Major Aspects of Growth In Children). They are amazing. It is a foundation made up of parents and families that have gone through most of the specific growth disorders. They have helped educate me about what could have or could be causing Daylon not to grow as he should.
In July they have an educational convention where you can go and talk to the leading doctors in the field pertaining to your child. We would love to go and are in the process of applying for a scholarship but we would still have to come up with the money for airfare. Things have been really tight around here with Shawn being out of work for a month and a half so we can't do it alone. We are asking our friends and family, even strangers to rally around us and help us get to the MAGIC Convention so we can learn more about Daylon's growth disorder and how we can help him be all that he can be. Not to mention how we can help his sister's understand why their little brother has to have a shot every night and network with other families to see how they are dealing with all of the challenges we face everyday.
Daylon has been diagnosed as SGA. The MAGIC Foundation has helped us in so many ways. So many wonderful people to talk to that know what it is like to go through life wondering what you are doing wrong that your child is not growing. Wonderful people that help you understand the importance of advocating for your child to be sure they get the help and treatment that they need.

Background Story

Our son Daylon was born May 11th, 2008 (Mother's Day). He was considered IUGR at birth and weighed only 5 lbs. 5 oz. and 18.5 in. long (although the length is probably off, considering he was 17 1/8 in. when he was 5 days old). In the nursery he had a lot of trouble maintaining his body heat and keeping his blood sugar up. After the second day of numerous pokes on the heel the doctor told the nurses they could quit poking him because he was "asymptomatic". So they did and his blood sugars haven't been an issue since. He also had a lump on his collar bone that was later found to be a 4th branchial arch remnant. Throughout his first year he was consistently below the charts, not even on them. At one year old he was 13 lbs. 7 oz. and 24 3/4 in. Now at 2 years old he weighs 19 lbs. 12 oz. and is 29.5 in. long. According to our Endocrinologist Daylon's height age is that of a 10.5 month old and weight age is that of a 10 month old.
You can find more background information on Daylon's Caring Bridge site