18 month milestones & surgery. Again!

Day by day, there seem to be very few changes in Leo with regards to milestones (and btw, I decided recently I don't like that word - "milestones"!), but then months pass and Boom!  I reflect on where he started and I'm amazed. Just simply amazed by this boy.

Last week, Leo had his 18 month checkup at the pediatrician. His recent accomplishments include speed army-crawling, speed-cruising, super-transitioning while cruising, and just the other day he let go of the wall so he could pivot his body and grab my hands. The little stinker with "texture aversion" who won't eat table food at home has also been taking bites of table food at school. According to his teachers, he does a great job mimicking his peers. He has tried macaroni, mashed beans, banana, scrambled eggs, and just today blueberry muffin. And he has made it clear that he does not like pears whatsoever.

He's proven to us recently that he can do more than we realize, even though he's still lacking some confidence. We now know we have to raise the bar and Leo will grasp to exceed our expectations!

So back to the 18 month visit, can I be honest for a moment? All in all, his check-up went really well... until a few days later when I caught a glimpse of his report from the pediatrician to Early Head Start. More than half of his developmental milestones were listed as "below expected range for age".

This made me cry. 

Yes, I'm overjoyed by how well Leo is doing. On an "adjusted" chart, he is actually doing well for a child with an extra chromosome. The part that hit my stomach like a brick was the feeling that my baby boy was being judged. And yes, I love my pediatrician dearly. She thinks the world of Leo and is continually impressed by him. But to me, this piece of paper and what was written on it felt like the beginning of a trail of measurements that Leo couldn't live up to. Like a finish line set for the Hare, my little Turtle creeps along behind - albeit with the greatest of effort and the biggest of heart, ever trailing behind. So I'm not brought to tears often, but this did it.

On the same day of my pity party, came a return to the ENT doctor. If you've followed along previously, you may recall Leo had his tonsils removed (along with adenoid removal and ear tube placement) last December. He was 9 months old and afterward, developed a respiratory infection before being discharged from the hospital stay, became dehydrated, and developed pneumonia. All of these brought the most interesting Christmas gift of all - a Christmas Eve and Christmas Day stay in the hospital. This was really sad at first, but ended up making for a very memorable Christmas for our family, to say the least! (Read the post "where did December go?")

At the ENT visit last Friday, Leo returned to be evaluated for what we thought was re-growth of his tonsils that were removed, causing a restart of his moderate OSA (obstructive sleep apnea).  He's been having pauses in breathing at night, with gasps for air again. After peaking in Leo's throat, Dr. Mitchell decided to do a scope to get a more accurate look. What we actually found out was this - Leo's palatine tonsils (the ones that are visual and removed with a standard tonsillectomy) which were removed last December did NOT grow back, but his lingual tonsils (which are usually too small to be seen on exam) became super-sized!

Did you even know that we all have more than one set of tonsils?  

Neither did I!!   

According to the world of ENT, it's somewhat common for the lingual tonsils to peak in size at adolescence, especially in children with DS and obesity. It is rare for this to happen to an 18 month old. Rare. But it happened to Leo.

In light of his OSA symptoms coming back, surgery has been scheduled for November 20th to remove the lingual tonsils. Leo did have eye surgery scheduled for October 16, and that has also been moved to November 20th so he can have both procedures back to back with only one sedation.

While we were initially upset by this news, we aren't totally surprised. Sure, I'd rather not see him go through another tonsillectomy because the recovery is really, really difficult at this young of an age. But I would rather not see my baby boy struggle to breath at night, and continually wake up because of the struggle he is having.

So, there you have it. What's happening and the explanation behind it.

Thank you for always keeping our sweet guy in your prayers. He will need more, come November!

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

the ENT visit. Facing our biggest decision yet...

Sometimes being a parent is really, really hard.  This has been one of those times.  It's a hard job being responsible for the life of a little person, a helpless little person who can't make decisions for themselves. It's a struggle to know you're making the right ones for this little person. There's also a lot to be said for a "parent's intuition". Which brings me to our dilemma with the ENT visit...

Just to recap -- it all began with the swallowing issues Leo had from birth. Then it was worsened by the reflux within the first two weeks of his life. Which then led to the choking when he refluxed, which ended up awarding him the grand prize of the heart/apnea monitor.  If you've been following Leo's blog so far, you know he's been adorning the heart/apnea monitor for several months now. It was by chance through this little segway of his journey, a bigger issue was discovered -- Leo has apnea with bradycardia. In other previous updates, I've talked about the big sleep study which revealed obstructive apnea and his pediatrician's concern of a "floppy airway". Okay, so now that we're all up to speed, here's the update on the ENT (ear nose and throat) visit....

Ten days ago, Leo had a first visit to the ENT. We were somewhat prepared for the possibility of surgery being recommended for a "floppy airway"; however, most of the way the actual visit went we were NOT prepared for. We didn't expect Leo to be herded in, quickly checked over, and then handed a list of surgical procedures (5 to be exact...) that he would be scheduled for within the next two to four weeks... with little to no explanation as to why these recommendations were being made so abruptly.  We asked many questions and felt as if they were only answered halfway.  We left the appointment feeling a bit shell-shocked and completely uneasy.

That's really no way to enter scheduling a surgery - a FIRST surgery - for your five month old baby, now is it? This wouldn't be an outpatient surgery.  Oh no, it would require at least one night in ICU, plus another two nights as an inpatient. With our questions still lingering, we honestly couldn't imagine this ENT doctor being the one to hold our hand through the process.

Instead, with the help of a close friend and her wonderful network of people, we were able to get an appointment very quickly to see another ENT specialist for a second opinion.  First and foremost, we wanted to make sure all of the procedures being recommended for Leo are really needed at this point in time and safe for him at this age. Second of all, we were searching for someone who would feel like the right fit when it comes to communicating with our family.

So yesterday, with a pending surgery date looming for September 14th with ENT #1, Leo saw ENT #2 -- Dr. Mitchell at Children's Medical Center in Dallas.  Even before he shared his recommendations, we found him to be a perfect fit.  Maybe it was that he asked questions that were not addressed by the first ENT; maybe it was that he suggested some risks that were not previously addressed, or maybe... just maybe, it was (after Dr. Mitchell left the room to take a call from another physician regarding another urgent patient)that his nurse said "you know, you've come to the expert for your son's care. You can Google him and see he's written paper after paper about children with obstructive apnea who also have down syndrome."  Little did she know, I already had!

First, Dr. Mitchell performed a nasal endoscopy to take a look at Leo's throat, airway, tonsils and adenoids. This was done by placing a small tubing (the size of a feeding tube, with a light and tiny camera on the end for viewing) into Leo's nose, and feeding it down through his throat. Not much fun for Leo, even less fun for Mom, but we got the job done! From this view he could immediately see no problem with his airway.  Hooray - because based on this we were already minus one surgical procedure! He could see a lot of redness and inflammation from the reflux, which we thought was pretty well controlled but apparently the acid is still a real problem.

Leo's tonsils and adenoids are both large for his age.  They don't even begin to peak in size until closer to age two, and they are the culprits of the obstruction and apnea. Dr. Mitchell's first theory is that the reflux is contributing to enlargement of the tonsils and adenoids.  If his reflux is treated more aggressively, this may help things calm down without removing them right now. Since Leo's apnea is considered moderate (about 12 apnea events per hour during the sleep study), right now it's safe to wait a few months to give him time to grow - which could also help make the apnea less severe.

Even though Leo has no major heart defects from his trisomy 21, Dr. Mitchell explained that surgery should always be the final option for a child with Down Syndrome because of the potential for new cardiac complications due to anesthesia (something that wasn't suggested at the first ENT visit).  He recommended that he be cleared by Cardiology prior to any surgery (also not previously mentioned). Can you see a trend here that may have supported our parental instincts?

The only bad news -- there's no guarantee that the bradycardia will go away with the apnea decreasing or going away.  So regardless of surgery, there's no guarantee as to when we can ditch the heart/apnea monitor.  It will still be a "wait and see" kind of deal.

Our final decision regarding the ENT recommendations?  ....We will wait until December to make a decision. Leo will go back to his GI doctor this week to find a more aggressive plan for treating the reflux.  Then in December, as long as his symptoms don't worsen, Dr. Mitchell will take another look at him through nasal endoscopy and probably another sleep study.  If Leo is the same, or worse, then he will proceed with removing tonsils and adenoids at that time. He'll get a bonus of ear tubes (as most kids with DS eventually need them), and also have an ABR (auditory brainstem response - a specialized hearing test that is done while he is sedated, as most children with DS have adverse effects in hearing).

At the end of the day, it sure is good to have a resolution.  It's even better to feel totally at peace with it!  In the big picture, we know this is a minor decision compared to what some of our little friends with DS have been through. But this was our biggest decision to date. 

Thank you for your thoughts and prayers for Leo, each and every day of his life.

with love,
Joyce