more belated... 14 month update!

My, how time slips away!  Leo is 14 months old, and really soon he'll be 15 months. Before that happens, I better write down a 14 month update.  I'll just pick up right where I left off....

Last month, Leo was scheduled for a swallow study based on recommendations from his pediatrician and pulmonologist. The swallow study was performed mid-April.  Much to my surprise, we found out Leo is aspirating again.  This time, we not only get to thicken but we have to thicken even more (the "honey" consistency). The recommendation was made to vamp up his therapy for dysphagia (weak swallowing) that he's had since birth. It took a while to find a home health agency on our insurance plan but after working that out, Leo had the evaluation yesterday for "vital stim". It's a special therapy to stimulate the swallowing muscles and hopefully increase their function. He should hopefully begin the therapy 2-3 times per week in just a couple of weeks.

Leo also went to visit Dr. Weakley at Children's for our second ophthalmology opinion.  His opinion is ...to not rush into surgery. Hooray!!  I always love hearing that.  Especially since it's been less than 6 months since the previous surgery. We're now patching the left eye for 1-2 hours per day (although I admit, I've been a bad mom lately by forgetting more times than not...), and Leo will follow up in the ophthalmology clinic in July to see if there's been any change, good or bad. Surgery would likely not be performed until after he turns two years old.

Sleep study #3... the results are in, and Leo still has episodes of apnea.  Ugh!!  It's no longer moderate, it's now mild, but he still has pauses in breathing even after surgery to remove tonsils and adenoids. He's scheduled to see a sleep specialist at Children's tomorrow.  I'm not sure what the recommendations will be at one year old, but it will be interesting to find out.  Also on our agenda for tomorrow is a one year follow-up with the cardiologist.  Leo will have a repeat EKG and Echo to see if there are any changes to the PFO (patent foramen ovale). It's actually a very common hole between the top two chambers of the heart. His PFO measured a little larger in diameter than most, but we are still hopeful that it may have closed on its own.  Please say a prayer for that result tomorrow!

In feeding news, there are still baby steps being made toward texture. We found out during the swallow study that Leo has a "texture aversion". He gags just by feeling the textures on his tongue, before the food even gets close to his esophagus.  We are still trudging through the tedious process of slowly increasing textures in his smooth baby food. Oh so slow....

On the physical side of things, just WOW.  Leo has come along amazingly in the past six weeks!  He is not only transitioning quickly from laying down to sitting up, he is army crawling swiftly like nobody's business.  He also began pulling up to stand this past week and has been working on doing that with everything he can get his chubby little hands on!  His crib, the coffee table, fireplace, brother's toddler chairs, the couches, the side of mom and dad's bed, you name it!  The little boy is on a mission to not only stand, but try to climb or belly up onto things and also starting to move his feet a little into cruising mode. He has thoroughly impressed this momma with his physical determination!  He has also given himself a few bruises on the face area when he loses balance, but cuddos to the little one for not giving up.

On that note, I close out with this total cuteness, from our friend Heaven's birthday party this month...

 


with love,

Joyce

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