Wednesday, November 28, 2012

A little medical update on our lil' turkey - 8 months!

It's that time again, the end of another month. I know, I know... I'm a broken record by saying this. But I just can't believe another month has gone by!  Soon, Leo will no longer be 8 months old. His first year is going by way too quickly!!

Here are some updates on our little turkey....

November actually started out pretty slow and quiet, with fewer dr's appointments than normal. After more than two months of either steroids for croup or wheezing, Leo was FINALLY well enough to have his 6 month immunizations.  I was really excited about that until he ran a fever over 103!  This was his highest fever yet, and a little scary. He was miserable for about two days and then fine afterward. He also had the second of five months of synagis injections. Luckily, this month he had no reactions at all. Not even a smidge of fever.

Despite these brief "well" periods, Leo continued to have fluid in his ears, ear infections, and sinus infections. He's been on antibiotics for all of November with the exception of 6 days - currently on his third round. The good news is that he's required fewer breathing treatments this month than September or October, despite all his chest congestion. We think the Advair has helped tremendously. The bad news?  Advair in Leo's dose is now on 'back order' by the manufacturer and out of stock in all pharmacies in our area. Possibly another example of a pharma company choosing to stop making a medication dose that isn't in high demand, since it isn't as profitable?? So we recently had to switch to Symbicort. Praying that it will work just as great!

This month also brought along his follow-up with the ENT doctor. I had been dreading this visit for a while, since I knew it would bring us to facing the decision of surgery again. But now that the time is here, I'm just ready to get it all over with. Dr. Mitchell, Leo's ENT, and Dr. Rosen, Leo's pulmonologist, both agree that a current sleep study will ultimately decide where things stand with his obstructive sleep apnea and will decide for us whether or not we'll need to go ahead with surgery. As of right now, surgery is actually scheduled for December 20th. It would include removing tonsils and adenoids (to resolve the obstructive apnea), a bronchoscopy to look at his airway structure, tubes in his ears to resolve the fluid and infections, and ABR (auditory brainstem response) which is a hearing test performed under anesthesia to check for any level of hearing disability. The ABR is standard for babies and young children with Down Syndrome any time they are scheduled to go under anesthesia. Some level of hearing loss affects about 60% of children with DS, so it's important to identify and treat as early as possible.

So, the sleep study took place last Saturday night. Let me tell you... this one was even less fun than the first!  Leo woke up and wrestled with the wiring and nasal canula about every 15 to 20 minutes from 8:30 pm until 3:00 am, at which point he slept for a whopping 75 minutes straight (with a very sarcastic woooo hooo....).  At 4:15 am, there was no getting him back to sleep. Please pray that the technician didn't exagerate by saying he had enough data on his sleep.  I can't imagine either of us having to go through the all night battle of another sleep study any time soon!  Not to mention paying another $500+ out of pocket expenses to go through it again... ugh!!  I promise you one thing, this boy could pull a Houdini on any given day. He was ripping gauze, moving wires, and removing tape like nobody's business.  If only we could market that!

Last but not least, there was a visit to the GI doctor yesterday. It was by far the best visit of all this month!  After a huge weight gain noted at the previous visit, which was pretty concerning, Leo is now holding steady at the 50th% on the growth chart weighing in just over 19 lb. He's doing better symptom-wise with his reflux. The amount of food he's regulated all on his very own, right at 24 ounces a day, is perfect for his growth. Sidenote - I'm always amazed and surprised he can survive on such a small amount of food for his size, but apparently DS causes a much different (and usually slower) metabolism which requires less food.  The fact that he is regulating this all on his very own, and that we're not pushing him to eat what our previous babies would normally eat at his size, got us kuddos and props from his GI doc.  He's doing so well that he gets to wait another three months before going back for another GI visit!

On the therapy side of things, he's been working really hard with PT, OT, and speech (feeding) therapy. He's doing really well working on upper body strength and has come a looong way toward sitting up. Especially in the tripod position (holding his upper body up with his hands on the floor, while in the sitting position) for up to a minute, and he's starting to sit up for a few seconds at a time without holding on to anything at all!  Even though he's behind when Meris and Seth met this milestone, our pediatrician says he is still within the range of a typical baby at this point. He's also working on some new sounds beside ba and da.... he's actually working on Ma!  My heart swells at the thought of him saying mama.  (I've only been saying it to him since about one month old, you know!)  So three cheers for our Leo, what a hard worker you are!

To close things out, please keep us in your prayers this next week as Monday, December 3rd, we return to the Pulmonologist and get the results of the sleep study. Again, this will be the deciding factor for surgery on the 20th. We are at peace with whatever the outcome is, as we only want whatever Leo needs. Obstructive apnea can cause pulmonary hypertension and new cardiac complications for him, so we want to fix this if needed. Please pray that the sleep study actually has enough data so that a decision can be made and not postponed. Surely God will have some mercy on us, or at least pity, after what we went through last Saturday night!

Blessings from Leo to each of you...

Love, Joyce

Monday, November 26, 2012

Giving thanks, in November.

All month long, I've been reading about what all of my "facebook friends" are thankful for. Each day there is something different. Friends, family, children, coffee, seat warmers in the car, a free Saturday with nothing on the calendar... the list is endless. Even though I wasn't one of those posting my "daily thanks" this year, believe me, I have so many things to be thankful for. I truly do! 

One of the things that I'm most thankful for this year has been Leo's good health. You wouldn't guess it by reading about all of the doctor and therapy appointments he has been to so far, or by the look of my calendar in the month of December - as we are bound to set a record for him! But compared to a friend in our local DS community with a baby who went in for open heart surgery a month ago who has been in ICU ever since, compared to our friends who have seen their sweet daughter go through the unimaginable in her fight against leukemia for the past 18 months, and another friend whose sweet boy has been battling brain cancer for years with an incredible amount of therapy, as well as the endless stories of other children fighting health battles that I seem to come across everywhere, every day...... in comparison, I. Am. Thankful.

Even more than this, I am thankful to have a heavenly Father, almighty God, loving Lord... who listens to our prayers as we petition Him for all of these children. One who provides comfort and peace for those in need. Who tugs at our hearts to reach out to others who need His love as they walk through their darkest days, especially those moments when caring for and worrying over a sick child. A loving God who sent his one and only Son to be born in a stinky stable and die a cruel death on a cross to save us all - giving us the Hope of an Eternity with Him, along with those that we love.  For this reason, above all things, the one thing I am most thankful for this month is .... Leo's baptism. 

On November 11, 2012...

We made a vow to raise Leo in a Christian home.

Leo John Christopher Ghormley was committed to our heavenly Father!

and we Celebrate!

2 Timothy 3:14-15   But as for you, continue in what you have learned and have firmly believed, knowing from whom you learned it and how from childhood you have been acquainted with the sacred writings, which are able to make you wise for salvation through faith in Christ Jesus.

With love,