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| 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.
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.
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| 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!
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| watering my girls |
