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

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,

Joyce

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

What I've learned from Leo, so far...

Do you think it's ironic that in October 2011, I found out my son Leo would be born with Down Syndrome? Or am I just that lucky?  October is "Down Syndrome Awareness Month". I'm happy to say that one year later, in October 2012, I'm more aware of what Down Syndrome is... and what it is not.

Here are a few things I would love to go back and tell myself one year ago. And if you're a parent who has been given the news that your child has an extra chromosome, here are a few things I want you to know.

1. The families you read about who say how happy they are having a child with Down Syndrome in their family, how much they love their child with disabilities, and how wonderful life is... are honestly telling the truth.

A year ago, I scoured the internet looking for "real life answers" on how life would be having a child with Down Syndrome. I came across letters through the Down Syndrome Guild with stories about how normal things were for other families, and how wonderful it was to have these children.  I thought they must be fooling themselves. I searched through blogs and other sources on the internet... and still, only more bright and normal stories!  I thought they were just looking for the bright side, or painting a pretty picture for everyone else. Where were the stories about how hard it was, and how sad they were? Afterall, I was pretty sad and Leo hadn't even arrived yet!

So one year later... Okay, I admit it. I was wrong, and they were right. There, I said it!  Our life is completely normal. We have a 7 month old baby boy who brings joy to our lives simply because he is our son and a little brother to his siblings. He cuddles with us, smiles and laughs, he jabbers syllables, he makes stinky diapers and rolls all over the floor. Leo even throws some pretty mean fits, maybe I should be sure to share that sense of normal!  Simply put, he is a sweet, sometimes tempermental, and chunky 7 month old. Who just happens to have an extra chromosome.

2. It doesn't take someone "strong", "special", or hand selected by God to raise a child with Down Syndrome.

I still hear how "strong" I am, what a "special" family God has picked for Leo. I would like to think we are all of those things. But honestly, all Leo needed was a family to love him. The same as every other child. God heard our prayers for another baby, and science or nature formed him the way he was meant to be. Now since I'm NOT a perfect person, God gives His grace to cover my mistakes as a mom.  I just want you to know that if you're expecting a child with special needs, you don't have to be strong all of the time or special in any way. The only requirement is that you love your child... and believe me, you will!

3. You will be glad you had prenatal testing to inform you that your baby has Down Syndrome. You will be thankful to have the time to adjust to how he is made, so when he is born you can completely focus on him and merely enjoy his arrival.

I am so thankful we knew before Leo was born. The majority of families I have met through our DS connections didn't know prenatally. So many women say "I didn't want testing, because it didn't matter. We would have had the baby no matter what." Knowing in advance was the biggest blessing, as it simply gave me time to get my crying and sadness out of the way. It's as simple as that!

The testing wasn't to give us the avenue to decide about whether or not to continue with the pregnancy, it was simply to let us know if there was something wrong with our baby. But it did make me realize the "choices" that parents face with today's medical technology, and for that I am torn and sad.  For every Leo, there are 9 others like him that are terminated by their parents. That is a whole other night of writing... seriously. 

Bottom line, I would never have changed how things worked out for us. The numbers reported about the risk for amnioscentesis is VERY HIGHLY exagerrated, especially when you look at the treatment from high risk perinatalogists in major cities. The perinatalogist who performed mine had a complication in only 1 out of 600. That is miniscule compared to what we gained out of knowing. I will also say that for every mom I've met who didn't have testing done prior to pregnancy, they now say they wished that they had known.

4.  Even if your child requires a lot of doctors appointments or medical intervention, you will make it through. In the midst of all of those appointments, you will even find others who are going through more than you. So be thankful!

As you know, Leo has had a few minor issues. Yet things could always be worse. For someone else, they are worse!  Some weeks he has no doctors appointments, and some weeks there are several, along with therapy appointments. There are moments when life feels normal and routine, and times when I feel "doctored out". In the midst of those times, I've always seen or read about someone whose child is going through more. I would love to see no child going through a ton of medical treatment... but then again, we are blessed to have modern medicine to treat our children and give a better quality to their lives.

5.  The world has given you expectations of how your child should be born, but this child is going to change how you feel about that.

I don't know what I really expected Leo to be like.  I tried to imagine it, and could never clearly form him in my mind before he was born. I do know that when he was born, I instantly saw some of Meris (his older sister) and some of Seth (his older brother). The way he would sleep with his arms above his head like Meris, or the way he widens his big eyes like Seth.  When he was first born I thought, "Hmmm... this kid is just like my others. Are we sure he has Down Syndrome?" In fact, I can't tell you how many friends of ours would say the same thing. It was suggested that we should have him "re-tested". Well, I don't know... are we sure his DNA was correct the first time? Could his DNA have changed? Hmmm...

Looking back, I love the fact that we questioned whether or not our child has an extra chromosome. I love the fact that our close friends questioned it as well. Do you want to know why? It proves my point of how I feel today. And THAT is... there's no difference between my children. They are all perfectly and wonderfully made just the way they should be. I really do look at Leo and see him the same way as my other children. I really do! In fact, I remember filling out paperwork for Leo when he was a couple of months old and coming to the question "What is your child's disability?" and stopping to ask the person in the office... "Do I put Down Syndrome there?  Is DS a disability?"

I also used to think that I saw all children with disabilities equally as other children, but I was wrong. A child with a disability now captures my attention, unlike before, and I love to see them tick in their own special way. Having Leo has made me realize children with a disability compares to blue vs brown eyes, how tall they will be, if they are naturally athletic or a musician, or whether or not they have freckles. Oh I know... there's a bigger picture to have a disability. But really and truly, I don't see that right now.

His extra chromosome doesn't define him, it merely adds to the list of his features... you know, like "blue eyes, light brown hair, chubby cheeks, strong legs, and three chromosome 21."  Yes... that's my Leo.

Love,
Joyce

One year ago. The day that changed my life as a Parent.

One year ago today, the normal life I knew came to a screeching halt.  On October 7, 2011, I was given news that turned me into a scared, unsure, shocked, and grief-stricken mom-to-be.  Chris and I easily classify the two weeks that led up to October 7th, and even the weeks that followed, as the hardest period of time we went through as a married couple.  Life doesn't prepare you for what you even think will be hard, and nothing prepared us for this.

Today, I'm amazed at how things have changed in one year. There are so many thoughts I want to share with those parents who just found out their baby will be born with Down Syndrome.  To understand where I came from, here is the letter I wrote to our closest friends and family once we had a little time to process the news about Leo.  By reading this, you will instantly see how much my perpective and how much "I" have changed in one year.  We all know how Leo's story ends... but by reading this, you will appreciate even more what I will be sharing with you when I blog tomorrow.


November 9, 2011

Some of you know the very beginning of Leo’s story, but with many of you we have not yet had a chance to share.  The past six weeks have been very tough for our family, especially for Chris and I as parents.  Considering the unknown difficulties that may lay ahead for our family, I thought now would be a good time to share Leo’s story with each of you.

On September 22, I received the news every pregnant woman fears – there was an abnormal result from my 12 week nuchal translucency screening.  On the one hand it was scary, on the other hand hopeful that it was an error… a false positive… anything but a chromosome disorder for our baby.  The results showed our baby to have a 1 in 23 risk of Trisomy 21 (Down Syndrome) and a 1 in 5 risk of Trisomy 13 or 18, both of which are fatal.  No one wants to be that “1”.  I thought Trisomy 21 would actually be the better news, even though it was a lower risk.  At least with that our baby could live.  I heard story after story from other moms who had been through this abnormality, with results being false or incorrect, who ended up having a healthy baby or knowing someone who did.

On September 27, Chris and I met with the genetic counselor at my high risk doctor’s office.  She agreed with my OB that the risk of Down Syndrome was unlikely, but she feared the high risk of Trisomy 13 or 18.  We also found out that with Trisomy 13 or 18, certain or even most organs don’t develop correctly and a level 2 sonogram could possibly confirm those chromosome problems even before getting the results of the amnio.  The counselor felt the high risk we were faced with warranted an amnioscentesis in order to rule those out and ease our minds, or confirm the chromosome disorder and prepare us for the worst.  We agreed and scheduled the amnio.

On October 5, I had a level 2 sonogram and amnio.  The sonogram showed the baby’s organs to be developed normally (from what they could see in this tiny one).  We had hope!  Just to be sure, we followed through with the amnio being performed.  By the end of the appointment, at only 15 weeks into the pregnancy, we found out we were expecting a little boy.  Our second Boy!  A brother for Seth – yay!  ANOTHER brother for Meris, awww…  Two days later, we would get results from the rapid test called “FISH”. It provided results on the four most common chromosome disorders – Trisomy 21, Trisomy 18, Trisomy 13, and Gender.

On October 7, I received the call from the genetic counselor with news that changed our lives forever.  The FISH test confirmed Trisomy 21 (Down Syndrome).  My heart sank.  My mind went blank.  I wasn’t expecting this because it was the “lower” risk.  This should have been the “better” news, but to me it felt like the “worst”.  I should have been happy that our baby had a better chance of being born, a better chance of living.  But instead, my heart was broken into a million pieces at the thought of having a baby who would not know a ‘normal’ life.  I shared this with a few friends… again, everyone had a story of someone they knew who received a result from “a test”, with the same news, who gave birth to a perfectly normal baby.
Now you all know what I do for a living.  I work in the medical field with clinical research, I spin down blood and send it off for testing all the time.  I’ve seen patients, or at least read their clinic notes, with a new diagnosis who want to believe there was some mistake in the lab.  I spend time wondering why they feel that way, why they don’t just accept the test result and move forward?  Well for a while, I became that patient.  Wanting to hang on to some false hope that this was all wrong, and the final test would confirm that mistake.  Even though my heart wanted to hang on to any possible hope, my brain knew that it would be extremely rare for this result to be wrong.  But somehow, I convinced myself that I wouldn’t accept it fully until the results of the SECOND chromosome test, performed in a separate lab, came back.  Surely two results from two different labs could either confirm the result or point out the human error that I so desperately hoped for.

The next few weeks were a roller coaster of emotions.  On October 19th, the results of the full chromosome testing was completed and confirmed the Trisomy 21, yet again, was a fact.  Both tests had the same result.  This was really, really, real.

The next step would take place on November 2, at week 19, with another Level 2 ultrasound to look at the health of this baby boy… this little but growing bigger every day guy, our little Leo.  We never knew, until now, that there are a multitude of physical challenges for babies/children with Trisomy 21.  There is a wide range of heart defects (70% risk?), digestive organ defects, hearing and sight deficits, just to name a few.  And the most common issues, which we will wait even longer to determine, are the mental status and learning disabilities of this little boy.  At that sono on November 2, we received the best possible news parents in our situation could hope for.  Aside from the genetic testing confirming Trisomy 21, and aside from not knowing our baby’s mental status that will develop after he is born, this sonogram showed we had an otherwise completely healthy, 15 ounce (measuring large for his gestational age), with “big feet”, sweet baby boy.

Although our baby boy’s health is as good as we can hope for at the moment, there is still the possibility of some minor birth defects.  He is also at higher risk of not making it full term, although I am being followed very closely by my OB and Perinatologist in case intervention is needed.  So we ask for your prayers for his continued progress, good health, and God’s protection.  We are making a leap of faith that God will protect him, provide for him, and most of all give us the courage to raise this little boy to be whatever he was meant to be in our lives and in the lives of others who share his path.

So why am I sharing all of this?  There will be times ahead when we need the help and emotional support of our family and closest friends.  But most of all, as I've already mentioned, we need your prayers.  For us, and for Leo.  We have faith there is a reason God has chosen us to take care of this special little one, and we want to continue sharing his story with you.  Until the next chapter begins…

The Ghormleys

Thankful, today, for answered prayers.

Love,
Joyce

 

the month long viral extravaganza

I don't think this is the first time I've said this, but it really would be okay if it was the last... Leo has had quite a busy month!

On August 27th, a month ago, he began daycare.  Let me tell you that we adore the teachers at Early Headstart. We are so blessed to live in a community that provides this opportunity for our Leo!  This is no typical daycare, the usual child to teacher ratio has been 3 to 1. On some days, 4 to 1, and even on other days 1 to 1. It goes without saying that Leo is not only spoiled with love and attention by them, he is also given a lot of opportunity to work on his goals set by the therapists.

His OT, PT, and Speech Therapist have routinely seen him at "school" for the past month. He's up to one or two therapy visits per week, with the current big goal of sitting up. Even though he's come a long way with tummy time, he still has some work to go before sitting up on his own. This will be his biggest challenge so far, but I have no doubt he'll get there once he sets his mind to it.  He would MUCH rather stand, that's for sure... and if Leo could find some way to skip sitting up and go straight to pulling up, I believe our determined little guy would do it!

Working it with the Physical Therapist...

Working it during tummy time at home.

So back to the start of daycare... three days into it, Leo developed what seemed to be a cold. It started with cough and congestion and within a week he began audibly wheezing. After antibiotics for ear infections, breathing treatments around the clock, and finally a round of steroids, more than two weeks into this cold/infection and he was wheezing even more severely. The next part of his adventure brought a chest xray to check for pneumonia, azithromycin "just in case", an additional medication for his breathing treatments, and another (even longer) round of steroids to carry him through the next two weeks... until he was seen by a pulmonologist.

That's right, today Leo made a new friend which we have added to his list of specialists... Dr. Rosen, the pulmonologist.  We already love Dr. Rosen, even though we don't love the fact that he has diagnosed Leo with reactive airway disease.  What we love more about this doctor is the discussion he brought up with the goal of getting rid of this heart/apnea monitor!  Did I really just type that?  Seriously, I did. And with a smile!

Sweet, kind, wonderful Dr. R will be reviewing all of the previous pulmonologist summaries from Leo's monitoring events and setting a plan to get rid of this thing that's been attached to my poor baby while he sleeps for the past five months. If anything, the visit was worth hearing that!  We're also excited that Dr. R is the director of the sleep clinic located right there in the pediatric pulmonology clinic. He'll be able to re-evaluate Leo's obstructive apnea when the time comes to make a decision for surgery (removing tonsils and adenoids), and that decision is only a couple months away.

So what about the reactive airway disease?  Well, that means we may have a long fall and winter ahead of us - the absolute worst time for respiratory infections and the distress it could cause for Leo's breathing. He is starting a baby version of Advair as a preventative, and he'll be scheduled for Synagis injections for protection against RSV (which I'm so happy about, after knowing several of our little friends with DS who have been hospitalized for RSV!).  Synagis isn't a vaccine, instead it's an injection of antibodies given on a monthly basis during RSV season, which will help our little one fight off the infection if he's exposed.

On the horizon for our Leo... a follow-up visit with the GI doctor next week to talk about how his reflux is doing, his 6-month well checkup (which will actually be 7 months, since he was sick...), and his first FOOTBALL GAME... the "I-30 Classic" - Rockwall High School vs. Rockwall-Heath High School tomorrow night. 

I'll give you one guess, and one only, as to which of those we are the most excited about....!

Go Rockwall, Leo's rooting for you!

Love,

Joyce

 

Coming soon... a wrap-up about Leo's DOC Band journey, and a look at his round head!

the blessing of a half birthday

Six months... really?  Leo is celebrating his half-birthday today, and I'm having a hard time believing six months has really passed!  But it has.  And what a great adventure it has been! Aside from the numerous dr's appointments, alarms, moments of worry, sleepless nights and general newborn and baby events, there have been smiles and laughter, hugs and happy tears... and they have been too numerous to count.

For example...

A close friend said it perfectly today, "I have been humbled...". 

I am humbled by the past 24 hours as I have seen donations avalanche toward Leo's Lions (his team for the Down Syndrome Guild of Dallas, 2012 Buddy Walk). I simply made a statement last night that the big walk is two months away, and I'm humbled by the generosity, love, and financial support that has continued to come our way. Our team is now over 80% (over $400) toward our fundraising goal! 

I'm humbled to hear a story that one of our donors gave every penny that they made last night from tips at work. Every penny! For my child and others like him!  I'm humbled that our friends would challenge each other, as well as the hearts of anyone who would read our facebook page... to not only give, but give more by topping their donation by $1. I'm humbled that for every "thank you" I typed on facebook, there were numerous individuals who "liked" the statuses. Whether someone could afford to give or not, so many became aware of our efforts and the kindness of others has touched their hearts enough to recognize that publicly.

In the past six months, there are many things I've learned about Down Syndrome and families who stand up to the challenge of raising a child with a disability that have really changed my view (in the best of ways) toward disabilities. Now I can say today was a defining moment that has changed my view on the world (at least my world), where those around me have hearts the size of Texas.  Where kindness and compassion have not been forgotten, those with Down Syndrome are loved and accepted, and good deeds are alive and well.

God has an amazing way of moving hearts and showing Himself to us.

It's Leo's half-birthday, and I could never have asked for a better gift!



With tears in my eyes, and a humble heart,

Joyce and Leo

everyone deserves a sister like Meris

Meris was an only child for 10 years, until Seth came along.  She quickly understood what it meant to be a "big sister". By the time Leo arrived, she was 13.5 years old and had the sister routine down pat.  At first she didn't understand what it would mean to have a little brother with Down Syndrome.  Quickly she came to realize it only meant having another sweet baby brother to love.  Leo has stolen her heart and brought out the best in her. She is the one who has made him smile the most, the one who first got him to laugh, and she makes him feel completely and unconditionally loved.  She can calm him most easily, second to mom of course, and is just a natural caretaker.

Leo has been so blessed to be home with our family for the past (almost) six months.  Three months with mom, and the entire summer (almost another three months) with dad.  All the while having Meris to step in and watch, care for, and play with him. 

Tomorrow, Meris will have her first day of high school. Tomorrow, Leo will have his first day at daycare.  Even though I'm excited for both Meris and Leo, to see them each grow as they take their next step in life's journey, I'm sad to see summer end and our time spent during the day with Leo cut shorter.  I can't thank our sweet daughter enough for the hours and love she has shared with her baby brother for the first half year of his life.  He clearly adores his sister!  Here are a few glimpses of some of their moments together...

 How do people make it through life without a sister?

 A sister is a gift from God, sent from above to make life worthwhile.

 A sister reaches for your hand and touches your heart.

Best friends we'll be, my sister and me... 

Everyone deserves a sister like Meris...

with love and a full heart,

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

A First Milestone. Cereal from a spoon!

Now that Leo is five months old, and after a visit to the GI doctor about two weeks ago, we got the go-ahead to begin spoon feeding cereal.  Yay for Leo! 

Who knew that spoon feeding an infant with Down Syndrome could be such an adventure. There are different things to consider -- like the depth of the bowl in the spoon, how far to push back the cereal, or how to get into his mouth past his tongue!  The bigger Leo gets, the more I notice the size of his tongue. It's naturally wider for a child with an extra chromosome and he seems to be sticking it out more and more. He pushes it out against things that are put into his mouth. He blocks things that are trying to go into his mouth.  Are you getting the picture about our first experience with cereal on a spoon here???

It goes without saying that his first bowl was very adventurous.  Sit back and enjoy, as always, the many expressions of our sweet Leo and his first bowl of cereal. As only he can express it...

So... my mom is making me eat this stuff,
and I'm not so sure about it...

In fact, I don't think I like it one bit !

Okay now, someone make this woman stop!

Oh... wait a minute, maybe it's not so bad afterall...

Hey, yeah... I think maybe I like it.

Okay, yeah, I do!  I DO LIKE IT!!

Oh, how we love our Leo!  Just a couple more weeks and we are on to sweet potatoes...

love,
Joyce



the DOC Band (...journey toward a round head)

Pretty quickly after birth, Leo began to favor looking toward his right side.  Little did we realize that would cause his skull to quickly become misshaped.  By two months of age, we began doing everything we could to get him interested in looking toward the left. With no luck!

In July, when he was four months old, our pediatrician referred him to a wonderful place named Cranial Techonologies.  We had no idea how much Leo's skull had been affected until it was pointed out to us. He had flattening on the right back side, flattening on the front left, facial assymetry, and his right ear was shifted higher than the left.  When he had photos done, each side of his face (when put side by side) looked like two different babies.  It was so odd!

We also didn't know the changes in his skull has a diagnosis -- Plagiocephaly.  There can be several causes, but for Leo it was primarily due to "back sleeping". With Positional Plagiocephaly, normal growth of the skull is restricted because of persistent, chronic pressure of lying against that area. In Leo's case, the right back side of his head. This can also cause the brain to shift inside the skull, causing other areas of skull growth to shift - like in Leo's case.

Have you noticed how many babies you've seen with these little helmets on?  Since 1992, babies have been given the recommendation of black sleeping to lower the risk of SIDS.  While SIDS has decreased by 50 percent, Plagiocephaly has increased six-fold with the 700 hours that an average two month old spends on their back sleeping.  The solution?  A custom "molding helmet", to redirect the growth of the skull. 

Here we are at Cranial Technologies, with Leo going through the first step toward a custom molding helmet. Our little "robber"...!

And one week later, his not-so-happy-face in his new helmet.

As you can see, he's getting used to the idea. Just a little...!

Maybe adding a little Boy Bling will help...

Or some loving support from big brother can make things better :)

And so he continues... the journey toward a round head!

love,
Joyce

helmets, breathing, and spoon feeding the boy who makes us smile

It never ceases to amaze me how busy Leo can keep us!  In the past three weeks, he has obtained a DOC Band (cranial orthotic for plagiocephaly, i.e. misshaped skull), followed up with the GI doctor, began eating cereal from a spoon, and launched a new medical path with the ENT due to the non-optimal outcome of the Big Sleepless Study.  Whewww.  All that, plus his routine visits with the OT, PT, and Speech Therapist. Why yes, he is quite the busy boy!

The DOC Band

this was such an interesting and cute experience, that I'll make time for a separate post on it. So, more to come...

The GI follow-up

Basically, Leo is doing much better with his swallowing but not as great with his gaining weight. We think he looks like a little pudge, and perfect in every way; however, his GI doctor thinks he needs to vamp up the eating and growing. So we were finally given the go ahead on eating cereal. Woo-hoo! It was an awkward start with lots of tongue protrusion (although, I remember Meris and Seth doing a lot of the same! Leo just happens to have a little more tongue to stick out...). But after just a few meals, he's made great progress.  He actually swallows more than he wears!  Again, another topic of uber-cuteness, so I will do another post all it's own to share with you.  Here is a sneak peak though....

Is he priceless, or what?!

Results of the Sleepless Study, and the Big ENT visit

Yes, we finally got the results of the sleep study from July 20th.  I was told by a couple of friends whose little ones with DS underwent the same study to expect abnormalities, so this didn't come as complete surprise.  What we did find out (that is a bit concerning) is that Leo has a floppy airway. This is common with DS, and also common in younger infants.  But the bigger concern is that this is likely the contributing factor to his apnea with bradycardia (the pauses in breathing, coupled with drop in heart rate).  In fact, from the last download covering a four week period, Leo had nearly a hundred incidences of this happening.  Even though that sounds like a lot for four weeks, that's actually fewer incidences than the previous monthly download. Yikes! Needless to say, there is still no end in sight for this heart/apnea monitor since it alarms us when he is having a more severe episode that needs immediate intervention. So what do we do about this?  We aren't sure yet, but we're meeting with an ENT specialist at Children's today to discuss whether or not Leo will need surgery to correct his problem.  Please say a prayer for wisdom for the doctor, and for us to feel like the right decision is being made.

Until later...

"The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold." Psalm 18:2.

with love,

Joyce

blessed by Four Months

At the end of my last post, I teased you with something Leo was up to last weekend.  He spent some time with our good friend and photographer Amy Efeney.  Or as Seth calls her, "Miss Ammy"! 

Below are a few of my favorite moments Miss Ammy captured

on camera of Leo (4 mos) and big brother Seth (3 yrs)

Leo was kind of sleepy, not in the mood to smile, and the outdoor glare made him close his eyes a lot.
Despite all that, we still have some sweet shots....

and Amy's personal favorite is...

Oh how we love our sweet Leo!

Love, Joyce

4 Months, growing + the big Sleep(less) Study

July has been a busy month for Leo, and last week was no exception. He's been plugging right along with therapy visits, and even making headway with some milestones. Like one biggie - grabbing at and holding on to things.  Like his own feet!  SO utterly adorable. But then, I am a little partial...

Speaking of last week, it was Leo's 4 month checkup. Can we please slow him down already?! It was a good visit, other than the shots and fever that goes along with those. He's holding steady in the 50th % in length and 25th % in head circumferance, but his weight dropped from 25th to 20th % (at his whopping 13.1 lbs).  While 13 lbs sounds like a lot (and yes, we should be thankful that he's even measuring anywhere on the "typical" pediatric chart at all ...having DS), let me impress upon you how much smaller he is than our first two kiddos.  For example, Seth weighed over 13 lbs at his TWO MONTH check-up.  Both Seth and Meris were in the 90th % of weight by 4 months (and over that for length...) so it's a little strange for me to have a "littler" one!  But he's growing somewhat steady, and for that we're thankful.

The other two big topics of discussion for the 4 month check-up were (1.) the flattening on the right side of his head, along with mis-shaping of his forehead, which is now considered moderate, and (2.) the seemingly neverending heart/apnea monitor coupled with the sleep study that's been pending for several weeks now.

Plagiocephaly is the diagnosis for Leo's head.  It's pretty common, and I'm sure you've all seen the little ones wearing the "helmets".  Some babies are affected more easily and Leo seems to be one of those.  We've been trying to redirect him toward the left side for over two months now with no success, so he's scheduled for an appointment with Cranial Technologies on Tuesday to see about a "DOC Band"... or as we like to call it, a Superhero Helmet. 

As for the heart/apnea monitor, neither the pulmonologist nor our pediatrician feel comfortable giving an "end date" for using it.  In fact, after reviewing the data downloads Dr. London saw that Leo has actually been having apnea along with bradycardia (low heart rate). I did my own research when this began and found that those two combined put him at risk for something more significant.  Of course I tried not to think about it, because what's the use in adding unnecessary extra worry?  Even so, as we discussed things at his 4 month checkup Dr. London finally said the words out loud that I've been avoiding "...the risk of SIDS." Even though we're beyond ready to be done with this nuisance of a monitor -- because believe me, it's not cheap! -- the bottom line is that we're blessed to have it there to alert us when he has issues.  Weeks will go by with no alarms, Leo looks and acts healthy, and I think "he's doing great, does he really need this?" Then a night comes along like last night, with both apnea and low heart rate alarms, and I'm reminded once again that it's quite possibly our saving grace.  With the issues continuing even once in a while, we moved forward with the sleep study which we're hoping could provide some extra insight.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

So last Friday, with about 3 hours notice (he was put on a standby list in order to get him in more quickly... since the wait time for sleep studies is running about three months out!), Leo and I headed to Children's Medical Center for our little adventure.  We'll be waiting about 2 weeks for the results.  In the meantime, here's a glimpse at our adventure:

So many leads to stick on, but what a trooper!

Sensors in the nose and the bandage cap were

 a little more than he could take...

 

Soon, he started to settle in for the night.

Finally getting some sleep, but lots of tossing and turning. Especially for Mom!

And the next morning, a "sleep study hangover"...!

A little teaser for the next post coming your way, and a sneak peek at what Leo was up to yesterday...

More to come soon!!

With Love,


Joyce

Leo's June update: the business (busyness) of Down Syndrome

Has it really been about a month since Leo's given you all an update?  Wow!  I guess this is what happens when mom adds "work" back into her schedule...

So needless to say, I went back to work full-time on June 4.  I still can't believe that was almost a month ago!  Chris is out of school for the summer so dad is in charge of Leo now and doing a fabulous job!  Sure, there've been a few tough days.  Like the second day when I received a text saying "I quit.  I'm going back to school!"  Leo has missed mom once in a while. But all in all, he and Leo (and Meris) have been faring well and have gotten into a great routine.  Seth joined them all on summer break starting today, so now the real party begins!

What has Leo been up to, you ask? 

He had only one visit from the speech therapist, since he's doing so well with eating, and two visits with the developmental therapist this past month. His developmental therapist Heather is impressed by how far he's coming with holding his head up and rolling over! And with his smiling and interaction too. He's enduring tummy time like a champ.  He rolls over both ways, which means he can end tummy time whenever he wants to! The one thing we're really struggling with is how he favors looking to the right which is causing flatness on that side.  Little guy has too many other concerns going against him, so the last thing we need to deal with is a helmet to reshape his head or physical therapy to strengthen the left side... so we're working fast and furious to keep him looking and turning left as much possible.  What a challenge! Leo also had his first physical therapist assessment and started PT visits this month. 

A "little" milestone alert ~ Leo's now reaching for things.  Like mommy's hair, toys, ...... air! He likes to hold his right arm up in the air even when nothing is there.  Honestly, he looks like a little conductor. With his genes, I'm sure he will be!  "BIG" milestone alert ~ He rolled over from back to front on June 23!  He tried so hard to make it happen, and we were excited to see him do it.  Now he does it almost every day.

Just because Leo likes to keep the excitement going, he gave us a little scare mid-June.  If you've read my previous updates, you know he's been on a heart-apnea monitor since the beginning of May. Since he has had difficulty with swallowing, he was having issues with refluxing and then choking.  After limiting his bottles to 3 ounces for about a month, he was doing so well that I was at the point of considering asking the pediatrician if we could quit using the monitor.  It had been a couple of weeks since a single alarm sounded!  But on June 13th, Leo's alarm started going off repeatedly.  Not for the apnea part though (i.e., stopping breathing due to choking), but it was signaling a low heart rate. That was a first for us and quite a bit scary! A newborn "normal" heart rate resting is between 80 and 120.  We thought his low rate was set at 80, but found out after a SECOND episode of dropping heart rate (just this past week) that it is set at 70.  After getting the data downloaded by RT and reviewed by the Pulmonologist, we found out his heart rate has been dropping into the mid 60's.  The first incident went on for 3 and 1/2 hours, but the second one only lasted 1 and 1/2 hours.  It might be that dropping into the 60's in deep sleep is his "normal". But because of his DS and the potential for other issues to be considered, he's being scheduled for an in-depth sleep study where his breathing, heart rate, oxygenation levels, and a few other things can be reviewed.  Like I said, never a dull moment!
Now that Leo's getting a little bigger and older (his last weight was 12.5 pounds), we were able to increase his feeding to 3.5 ounces make that 4 ounces!  I was worried about how he would handle that. He's been spitting up more, but he doesn't seem to be refluxing any more than he was... so it seems to be going well.  And no choking... which is the best news!

Leo had his second swallow study on June 21. 

After two and a half months of thickening formula, his swallowing has improved to the point of NO MORE THICKENING!  Did I really just say that?  Because I spent so much time battling this issue, that I can't believe we actually get to stop doing it... But YAY doesn't even begin to describe how I feel about this.  The only time we need to thicken at this point would be if he gets sick and has to drink water or pedialyte... and I'll go with that!!  He'll have another swallow study in about two months, and hopefully that will be the last one.  Hoo! Ray!

Last but definitely not least, we've had multiple visits with the staff at the Early Headstart program.  After dwelling on our options for Leo's childcare starting in August, we've decided this will be the best option for him. Rockwall is lucky enough to have an Early Headstart program, and they reserve a percentage of their spots just for little ones with disabilities.  Leo's group will have a smaller teacher to child ratio (1:4, versus the 1:8 in tradition daycare).  He'll have CERTIFIED teachers working with him.  The teachers have training with all aspects of learning and physical disabilities. If anything new comes up that Leo has to deal with, the teachers will also receive training for his specific needs.  And our ECI therapists rave about how wonderful the facility and staff are!  Aside from being home with mom or dad, we couldn't help but feel this will be the best option for our wee guy.  We are so very excited that he was accepted into the program and found out about a week ago that his spot will be ready for him in August.  Thank you Lord for answered prayers!

Just because I have to end this update with a smile, watch the video below and see how only Meris can bring out the sweetest smile in little Leo.  Honestly, I don't know what makes me laugh more -- Leo's sweet smile and giggle or Leo's big laugh in the background!

With Love,

Joyce