Lately

Where do I even start? I can't believe my last blog post was 6 months ago, and what a full 6 months it has been! I'll try to catch you up...

Charlie and I at the Family Cafe conference in Orlando 

Charlie received a diagnosis of laryngomalacia around 2.5 months of age. Thankfully, it's a condition that he should grow out of. The main things we deal with because of it are noisy breathing called stridor and acid reflux (thank the Lord for medicine to treat this!)

In the beginning of May, we ended up in the hospital and Charlie received a diagnosis of infantile spasms (IS for short), a form of epilepsy. I posted about much of this on Facebook as we were dealing with it, so I'm not going to rehash all of those details here.

We are thankful that we caught it quickly and that the spasms responded quickly to the medicine. The side effects of some of the medicines were rough, but he seems to be on something now that is causing him minimal problems.

Charlie will be 9 months on the 14th and is progressing well. He has the best smile and Ellie loves tickling him and making him laugh.

He has mastered head control and rolling, loves tummy time and is attempting to crawl. Because he is lacking in upper body strength, he's developed his own method of achieving forward momentum by pulling his knees under him, pushing his head and arms flat into the floor and extending his legs to scoot his body forward. He definitely has the ambition to go places, he just needs some help fine tuning his methods! Thankfully, we  see a physical therapist every week and we are working on the proper way to belly crawl along with working on sitting up.

We've started pureed foods, but took a break because of the seizure medicines. His first medicine (predinsolone) made him ravenous and he was eating well, but his next medicine (Topamax) made him lose his appetite. We also had to give him his Topamax mixed into food and he started refusing to eat food. Thankfully we were able to get Topamax in a liquid form, but three days after switching to the liquid form Charlie developed a bad rash on his shoulders.

shoulder rash from Topamax

I learned a new scary thing, that in rare cases a rash caused by medication can be/develop Stevens-Johnson syndrome. Unfortunately, we have already entered the realm of rareness with IS, so I feel like these possibilities are closer to our doorstep. We stopped Topamax and have been on a new medicine, Trileptal...so far, so good! I learned that once the IS is stopped with steroids, chances are seizures will not return in that form. They might possibly present in a different form of seizures or he might never have them again. His current medicine helps protect him from the possibility of having seizures, which is important because seizures can cause developmental delays and regression. We'll go back to the neurologist in January for a follow up EEG and Charlie has the potentially for weaning off his seizure medicine at that point, depending on the results.

Charlie is back to sleeping through the night. That stopped while he was on predisolone - he reverted back to nursing every 2-3 hours round the clock. It was exhausting and I was thankful when his appetite normalized. Of course, a full night of sleep is still a rarity with our other two monkeys. Ellie usually finds her way into our bed like a stealthy little ninja in the middle of the night, and Tessa sometimes wakes up crying and asking for "tuck-tuck and paci".  

This is a hard season of life, with these little ones and their seemingly constant needs. I often find myself frustrated as a mom by repeating the same tasks over and over and over. Picking up toys for the umpteenth time. Turning off the bathroom light again and again. Correcting, disciplining and training, over and over again. Meals and snacks. Dealing with dishes that manage to multiply over the course of one day. There are so many things I must do everyday to keep chaos at bay. It has been a real and prolonged lesson in persistence and discipline and not procrastinating! 

On a deeper level, it helps me to consider my efforts in a different light. I have grown up in and continue to work in a family business in which we grow plants and flowers. I love analogies that have to do with growing things, so here you are:

To grow a healthy plant, you must water it, fertilize it, give it sun, the proper temperature and sometimes prune it. They are things you must do on a regular basis to yield a beautiful finished product. In raising children, you do some of the same things over and over again, many of them dealing with keeping them fed and giving them a healthy environment to live in. These tasks on their own can be infuriating in their endlessness, but if I consider that these labors are working to produce growth and development in my children, it makes it a little easier to persist in doing them. This season of life will change and my children will need me in different ways. Right now, I am trying to pause and take in the joy of these moments, but it's definitely easier to do when my soundtrack of life doesn't include crying (like right in this current moment :-). It's much easier when they're laughing!

watering my girls

Milestones

"Charlie is all mine," I told my four year old Ellie.

"No Mommy, you have to share (pronounced chair) him!!" Ellie stated forcefully.

"No, Charlie is mine!" stated my husband.

"No Daddy, you have to share him!" Ellie countered.

"Why?" asked Daniel.

"Because everyone will love him! And because he doesn't like you that much," Ellie explained.

Ellie & Charlie

The logic of 4 year olds can be entertaining as well as insightful. We hope that everyone will love our Charlie; it almost feels like everyone already does and for that we are grateful. We are also thankful that Charlie does like his Daddy, despite Ellie's statement.

We've passed the 2 month mark and Charlie is doing well. After his first couple of sleepy weeks, he finally got down to business with nursing and has been eating well ever since. He's gaining weight at a steady rate and has made great strides in his head control. After a few nights of sleeping all the way through the night at 2 months, he moved from the bassinet into his own bedroom and has been sleeping well there since. 

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He's had a few regular visits with his pediatrician and a first visit to his ENT (ear, nose and throat doctor). An ENT doctor is important with Down syndrome as many/most DS patients have narrower passageways - tiny ear canals and nasal passageways. It's more common for babies to experience fluid buildup, or as they get older frequent ear infections. It can also be a little harder to breathe, so we make sure to keep his nasal passageways clear with an aspirator (or as we refer to it in our family, the booger sucker). The doctor also explained Charlie will probably face some form of sleep apnea, but likes to wait to do a sleep study until the age of 5 as long as there are no issues before then. 

Charlie was accepted into Early Steps (aka Early Intervention), a program that works with kids ages 0-3 that have significant developmental delays or an established medical condition that will likely result in a delay. They evaluate your child and then set you up with a therapist(s) to give your child the best chance to minimize or overcome those delays. 

All that aside, we are doing well. Everything feels pretty normal, including the chaos that comes from being the mother of a 4 year old, 2.5 year old and 2 month old. 

I find I don't often reflect on the fact that Charlie has Down syndrome. It's a part of who he is, and he is a part of our family. It's our "normal". However, I do have moments, often unexpected, where something will hit me out of left field. 

My brother and sister-in-law welcomed their first child, a son, into the world about a week and a half ago.

Charlie and his new cousin, Xander

It is a precious thing to see people you love become parents when you know the many joys that are ahead of them. But I had a difficult moment when I saw my nephew holding his head up with more control than my 2 month old Charlie has. I picked up on another "skill" - I call it that because that's what my friend, an occupational therapist, calls it. My nephew was bringing his hands to center, or midline. I didn't know that was a thing until they asked me if Charlie was doing that when we did his evaluation for Early Steps at 4 weeks of age. Charlie has started doing it recently which I am happy to see, but it brought an emotion to the forefront that I didn't know was present. I guess if I was to be honest, it was jealousy. I was jealous that my nephew was doing these things on his first day of life when my precious 2 month old is still working on it. Jealous that it came effortlessly to this sweet newborn making me feel silly to call it a "skill" because it requires no learning period for him to do these things. Granted, pride and love and jealousy can occupy the same space. This wasn't an angry, resentful jealousy. I am thankful that my nephew already has such strength and development. I want to see him live up to his fullest potential in life. But it makes me consider that these 2 little skills that Charlie has had to work for at months are just the tip of the iceberg. 

Charlie is going to have many developmental delays in life. That is a fact. It will take him months or even years to acquire skills that come naturally to most children. He will have to work hard to gain many or most of these skills. It makes me take for granted less those abilities that children seemingly effortlessly acquire. 

My other nephew is almost 5, and he has difficulties eating. He has trouble chewing and swallowing his food.  He has undergone lots of testing and therapies to try to determine what the problem is, but his progress is achingly slow. My sister has shared with me how difficult it can be to watch other children eat, to watch them chew and swallow their food without thought. She and her husband are constantly prompting their son to chew, working constantly to get enough calories into him. I had no framework to understand this feeling until that moment in the hospital as I watched my newborn nephew. My sister and I spoke on the phone about this and she put it well. She said it's hard to watch other kids do something that your kid cannot do. 

I want Charlie to do as much as God has planned for him. I want to help him develop and grow and live up to his fullest potential. I will probably celebrate each milestone he accomplishes in a way I never did with my daughters, because of the time and effort it will take him to reach those milestones.

(If you read this post before and it seems different now, my originally published draft disappeared and I don't quite remember my final version...but I think the gist of this post remains the same :-)