Baby Girl’s last week as a ten month old:
47 weeks (October 28)
It took me awhile to realize it, but my little baby is almost 11 months old… And that means she’s getting closer to the BIG ONE! How amazing is that? For a child with Spinal Muscular Atrophy (Type 1), reaching the age of one is a huge deal. We are fully prepared to celebrate when the time comes; I have a “Frozen”-themed party planned for December 6th, perfect for a winter birthday.
After the pneumonia issue Khloë had, Jordan and I are doing our best to keep her from getting sick again. However, I’m not prepared for us to hole ourselves away for the entire winter. Maybe that’s what we should be doing, but right now I don’t think that is best for our little one. I think it’s important she has contact with friends and family. I’ve said this many times–Khloë is a very happy little girl who loves to socialize. It would be wrong to take that away from her.
Anyway, Tuesday afternoon we headed in to see Dr K for our flu shots. I’ve never had a flu shot before, but since Khloë needed to get hers, I got mine too. Ouch! For the rest of the day, and even a bit of the next, my arm was useless! It was so sore that I could hardly lift a glass of water… That’s never happened to me before with a needle.
Mary came Wednesday morning. She’s making a point of doing Khloë’s therapy as the first appointment of the day so that she doesn’t bring yucky germs into our house. She even wore a mask to protect Khloë. She’s an awesome lady and we love how she gets Baby Girl excited about new toys and activities.
Khloë celebrated her first Halloween on Friday! We didn’t take her Trick or Treating as it was much too cold out. Instead, Stacey and her two girls came over to play. Sofia dressed up as Sofia the First and little Raylyn wore a Tinkerbell costume. I had ordered a gorgeous tutu dress and matching headband from OnceUponATimeTuTus on Etsy and put that on Khloë so she could be a princess. I set up a back-drop, decorated it with free Halloween printables found on Pinterest, and did a photo shoot!
The nurse that visits once a month came on Saturday. I caught her up on everything that had happened over the past few weeks. She listened to Khloë’s lungs and said they sounded clear. I was getting worried that she might be getting sick again because since Friday she’s been sounding phlegmy. No matter how much I cough her (ie. use the CoughAssist machine to simulate a strong cough) and suction her throat/nose, I can’t get that yucky noise out of her. So even though the nurse said her lungs sound great, I’m still doing a full breathing treatment in the morning after she wakes and before bed, and any extras when I think she needs it.
25 weeks (May 27)
It’s hard to believe that in one week my little girl turns SIX MONTHS old. How did that happen?! I had planned on having professional photos done but since Khloë can’t sit up by herself, unless slightly reclined with cushions, I don’t feel that it will be worth the money. Instead, I’ll do my own little shoot. I’m searching Pinterest for some ideas.
First trip to the beach
Many people told us that by six months, Khloë wouldn’t puke as much. And they were right! She only wears a bib now if she’s nursing or has just nursed. Mostly I just have to worry about drool, but that doesn’t leave a stain. She’s still in size 3 diapers, wears 9 month onesies, and 6-12 month in most other clothing items. We still only bathe her with Aveeno Baby eczema products, which has cleared up her skin considerably.
Khloë likes to play “peek”, which is when I hold her arms and use her hands to either cover my eyes or her own, and then pull them away. She also likes to hear animal sounds, and makes her own high-pitched squeal quite often. She’s so silly. I love her enthusiasm.
On Wednesday, Mary came for Khloë’s first development therapy session. She did some exercises with her on one of those exercise balls, showed me some front-carry positions that provides enough head support, among other things. Some of the exercises I can remember; others I will need her to show me again when she comes back in two weeks. Khloë did great with the exercises!
The Many Faces of Khloë
On Thursday, I brought Khloe with me to the ladies’ potluck at our church. It made for a late night for her but she was pretty good for being up past her bedtime! All the girls, old and young, adore her.
Here she is:
24 weeks (May 20)
When a baby is born, we don’t expect anything to be wrong. Not after we see that she is perfect. But since about 2 months old, her family doctor has said Khloë is “floppy”. I wasn’t really worried until she turned 4 months old and still couldn’t lift her head while on her tummy. Even now, her head flops forward after she holds it upright for a moment. She uses her arms and manages to eat her hands, but even a plastic toy ring is too heavy for her. She rubs her feet on any surface, but does’t move her legs.
On May 21 we saw Dr M, a neurologist at CHEO in Ottawa. He noticed right away the low muscle tone (hypotonia) that Khloë displays. He tested her reflexes and found none. He performed an EMG (tiny acupuncture-type needles inserted in her wrist and feet and a machine that causes little shocks); the EMG showed a disconnect between her muscles and motor neurons. At this point, Dr M suspects a genetic disease. He sent Khloë for blood work, and it took three pokes before the nurse finally got blood out of a vein. Poor baby was so upset! Now we wait for the results of the test; if it’s negative, then the next procedure is a muscle biopsy that will hopefully provide us with an answer. Khloë is to continue with exclusive breastfeeding and not receive any solid food until we know that her throat muscles are strong enough not to cause her to choke and aspirate food into her lungs.
I’m trying not to stress out and worry my self sick. Khloë is happy, smart, and otherwise healthy. She may need physio, she may learn to sit and roll over with a lot of help, and if she is lucky she may even learn to walk. I hope that with the support of our friends and family we will be able to get through this and provide our baby girl with all the love she deserves. She is definitely spoiled. 🙂
On a happier note, we have a picnic planned this week with Stacey and the girls and a visit with Amanda and the boys later in the week!
The latest photo:
23 weeks (May 13)
Mary from Infant & Child Development came to assess Khloë on Wednesday. She was very nice and explained her concerns. She pointed out a few things that Khloë does with her hands and feet that I hadn’t noticed before; I wouldn’t have known it wasn’t normal, as she’s my first baby. Mary said the problem looks like low muscle tone, which would explain why Khloë still has trouble holding up her head and doesn’t use her legs much. She agreed it would benefit Baby Girl to come into the program, so starting in June she will see Khloë every week to work with her. She also wants to teach me infant massage!
Then on Thursday we drove to Ottawa and met with pediatrician Dr I at a medical centre. She looked Khloë over and said she was very concerned about her gross motor development. She is going to get Khloë an appointment with a neurologist at CHEO for an MRI. I really don’t know what to expect for her development or what the issue could be. She’s such a happy baby and has no idea that she’s behind for her age.
I’m glad we have the resources here to provide support for my girl.