Tuesday, October 30, 2012

The end of October & end of 7 months

It's the end of October, the end of Down Syndrome awareness month, and nearing the end of Leo being 7 months old.  I guess that means it's time for a Leo update!

Overall, Leo has done pretty well with his therapists.  He hasn't mastered balance yet and falls to the side easily when trying to sit up, but he is progressing - he actually puts his hands (or at least one) down in front of himself now to hold himself in the "sitting up" position for short periods of time. This is new progress, and we're excited!  We know he will continue to make progress because he has great therapists.  We can also see the wheels turning when we say certain words to him. He looks like he's mouthing the word (like "bye" or "hi"), and then attempts to make the sounds. He's done really well with bah and sometimes dah though!

At the beginning of October, Leo had a follow-up visit with the GI doctor (gastrointestinal, in case you need to know!). He had gained almost 3 pounds in just 5 weeks.  I know... that's insane!  We had gone back to thickening formula again at the end of August in order to treat his reflux more aggressively and hopefully get the inflammation of his tonsils and adenoids under control, to help the obstructive apnea.  But this chunky of all chunkiness was actually going to work against us. All this weight gain was now making his reflux worse. So, back to NO thickening we went. According to Dr. Whitney, Leo is going to be a "moving target". Sigh...

The second week of October brought congestion back again and Leo's 6 month "well check-up", albeit delayed.  At the well check, Leo was also wheezing again. That meant another delay of his 6 month immunizations.We weren't sure why the advair he began taking several weeks before was not kicking this wheezing in the tail? But back to adding breathing treatments again we went. This respiratory infection was so nasty, it soon brought on a fever, blockage of his nasal passages, and labored breathing - especially when he slept.  We made our first trip to the Emergency Room just to check things out.  In typical Leo fashion, he was happy and calm for the ER staff.  Yet again, I heard "wow, you can't tell how sick this little guy is just by looking at him. But now that I'm listening to him, he's pretty sick!"  Thank goodness he was well enough to be discharged home, and mom's worries were put at ease a little more.

We had some awesome news in October as well. Not only was Leo approved for synagis injections (antibodies - very expensive ones at that - which help minimize the symptoms of RSV) for five months to cover him during RSV season, but our insurance is covering the cost of the medication 100%!  To put into perspective how exciting this news is... the injections total approximately $10,000 for the five months!!! We are thankful to God for the smallest of blessings, and even more thankful for this huge blessing! Leo made his first visit to the synagis clinic at the pulmonologist's office in mid-October. The injection is definitely no fun - given in two doses (one for each thigh), and the medication is thick so it really hurts.  He also ran a fever for almost three days after. But we are really hopeful this will help our little guy out, considering respiratory infections are so hard on him.

Last week, Leo had to return to the pediatrician for ear infections, and additional delay in the six month immunizations. At that point, he had been congested for over two weeks so we weren't surprised it had settled in his ears. He also visited the pulmonologist again to decide whether to make adjustments on his medications. No changes were made, but he did test for RSV and Leo was negative. This has just been a nasty virus of some sort that really is just starting to go away after more than three weeks.

Saving the best update for last... after more than FIVE months, we were finally given the green light to get rid of the pesky heart/apnea monitor!  Hip hip triple hooray!!!  I can't lie, we were really nervous at first to not use it, but Leo has done wonderfully without it.

So that brings us to the end of October. This past month has been Down Syndrome Awareness month, and in less than five days we will go on our first "buddy walk". With the help of our friends and family, $730 has been raised so far by our team "Leo's Lions".  We are so completely overwhelmed and grateful!  Money raised will go to the Down Syndrome Guild of Dallas. This organization has already been a pillar for our journey. We want them to be around for years to come, as Leo will rely on them to be there for him. We have been looking forward to this walk for months, and cannot wait to enjoy the experience as a family, with our friends, and with other families going through the same journey as us.

Thank you, from our little Lion!

May you all have a fun-filled Halloween!  Until next time...

love,  Joyce

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