Khloë: 8 months old (38 weeks)

My little girl:

38 weeks (Aug 26)

38 weeks (Aug 26)

This was a crazy week! We spent August 26th to September 4th in Ottawa while Khloë had surgery and recovered. Unfortunately we got stuck at CHEO over the long weekend and had to cancel our trip to visit family in Kingston.

I’m not going to go into much detail about our hospital visit because I want to save that for a separate longer post.

On the Tuesday of this week, when we finally received confirmation that the G-tube surgery would take place the following day, we loaded up the car with all our stuff–I think we need a bigger vehicle already–and made the familiar drive to Ottawa. Khloë recovered well after Wednesday’s surgery and only had to spend one night in ICU. We had a much longer stay at the hospital because Khloë hadn’t gained any weight since the beginning of July and the dietician wanted to make sure we had a diet plan in place. When she was finally discharged on Sunday, Khloë had gained enough to satisfy the doctors.

Last photo shoot before surgery

Getty Owl bracelet

We spent Labour Day relaxing in our family suite at Rogers House or out for a walk around the neighbourhood. Khloë liked being out in her stroller, in the carriage position, watching the sky and trees overhead. We dressed her in T-shirts and pants rather than onesies.

Update on G-tube surgery

Once again I find myself behind on updates, but I have a really good excuse. We found out on Tuesday of last week that Khloë was scheduled for gastrostomy surgery on Wednesday, August 27th. We packed up the car and drove to Ottawa and have been here for a week now. Khloë was discharged from CHEO on Sunday and transitioned to the care of Rogers House, where we stayed together. There was no point in driving the 2.5 hours home only to have to come back for Neuromuscular Clinic today.

Tomorrow we will be going home, at last! Once we settle in I will prepare updates as quickly as possible. Khloë is doing great and I am looking forward to getting back into our daily routine.

SMA: Neuromuscular clinic (July 9)

Khloë’s first Neuromuscular Clinic appointment was July 9th. Clinic only runs on Wednesdays, every other week. Unfortunately, our visit was not as successful as we had hoped it would be. Most of the specialists were great, but one doctor kind of ruined the day for us.

On Tuesday, July 8th we met with Khloë’s pediatrician, Dr I. That appointment went fine as it was just a follow-up on how we were dealing with our daughter’s diagnosis. Dr I asked if she can continue to follow Khloë’s progress; we agreed to this request.

That same day we saw the surgeon who would be performing the G-tube surgery. Dr B was extremely hard to understand and I felt that there was a language barrier. I’m sure he’s a great doctor, but I didn’t feel comfortable with the consult. He doesn’t want to do the surgery while Khloë can still eat orally, but that contradicts what her neurologist said. Dr M originally told us that getting the G-tube proactively, before she is sick and has developed breathing problems, would be better for her, especially in regards to recovery. I think these two doctors need to have a discussion. Jordan and I want Khloë to have the surgery by the fall, at least.

On Wednesday, July 9th we walked back over to the hospital for our first visit to the Neuromuscular Clinic. It turned out to be a long, exhausting day. Khloë was very tired as she was up at 6:30 that morning; she refused to nap before the appointment and then as soon as we arrived I could tell she wanted to sleep. She needed a lot of attention to keep her from being really miserable, so it was hard for me to really concentrate on what the specialists were saying. I felt rushed and overwhelmed.

First we met Kellie, the dietician, who told us to start Khloë on one food at a time to check for allergies. I explained to her that we already give her mixed cereal and various fruits and veggies all within the same days and she hasn’t had any reactions. I’m not going to change the way we feed her because there are no food allergies in our families. I asked her to find out more information about dairy products, as I’ve read that SMA kids have a hard time digesting the fat molecules in dairy because it takes too much of their body’s energy.

The Occupational Therapist was still trying to find us a bath seat. She also found a neat portable pool (it’s tall and deep) which includes a flotation device that keeps the child’s head above water. She’s hoping to get funding to cover that item. The pool would be beneficial since it would give Khloë the ability to really move her arms and legs–aquatherapy!

The physiotherapist showed us how to do chest therapy with percussor cups. We are to do 3 minutes on each lung lobe when she gets a rattle in her chest or when she is ill.

Next up was the respirologist, Dr. K, a few students, and the respiratory technician. I’m not at all fond of the respirologist. He seemed to think us wanting to be proactive with getting Khloë specific equipment early on wasn’t a good idea–we requested a suction machine, CoughAssist, and pulse oximeter. We don’t want to wait until she’s in distress; we want these items as soon as possible so we can be trained on how to use them. He is giving us the suction machine, which the respiratory tech, Carlie, showed us how to use later on. However when I said I wanted the CoughAssist machine (as every single SMA parent has told us to get it ASAP) Dr K said that he only recommends it for children over 5 years old…to which I replied that Khloë may not reach that age. I was getting frustrated by this point. So after he left, Carlie compromised and said she would give us the loaner CoughAssist machine to try out in 2 months time when we go back. Jordan and I have come to the conclusion that we still want it NOW and not in 2 months. I sent an email to Carlie about our decision.

Finally we saw the social worker and explained all our concerns about Dr K. She assured us that if we don’t get what we want, we can always ask for a second opinion because it’s completely our decision about what equipment we want. With the neurologist not being there, we couldn’t go to him. The social worker and our nurse coordinator have been awesome, though!

An update on Khloë’s illness

As Khloë’s symptoms were not improving, and her cough and rattling breath was worrying me, I took her to see her doctor late Wednesday afternoon. On Monday she had seen a nurse practitioner, but this time it was her family physician. Dr K took a look at her and said that it looked like bronchiolitis.

She sent us down the hall to the ER (the health team is located in a hospital) and we checked Khloë in. They took us right away. She was examined by another doctor and given a steroid drug that would help with her breathing and breaking up the mucous. Khloë was getting upset by this time; she really wasn’t feeling well and didn’t like the constant poking and prodding. The doctor sent us to the X-ray department because she wanted to rule out pneumonia.

Jordan had to put her in the Pigg-O-Stat, a contraption that looks like a torture device to children (and to Mommy). She was closed in with her arms above her head, crying because she didn’t know what was happening; I felt so terrible for having her in there. The technician took the x-rays very quickly, though, and within minutes Khloë was out. She looked so pathetic and sad in that thing.

After that ordeal, we went back to see the ER doctor. She said she’d had a look at the scans, but without a radiologist there to examine them, she wasn’t 100% certain it was pneumonia. She said she could put Khloë on an antibiotic that it may turn out she didn’t need, or we could wait until the next morning for the radiologist to view the scans. We decided to wait for the results.

Because Khloë wasn’t nursing very well with her difficulty breathing, I woke up at 4 am Wednesday morning with a severe pain in my left breast. Mastitis struck again! By 10:30 am I had developed a fever, headache, and chills. Khloë and I slept most of the day until it was time to see Dr K. At Khloë’s appointment I mentioned that I was sure I had mastitis again. One quick peek, and Dr K wrote me a prescription for clindamycin.

So we went home with sick baby and antiobiotics for Mommy.

Thursday morning Khloë seemed in better spirits. The rash on her face and torso had disappeared. However as the day progressed she got fussy and began to cluster feed. She still isn’t feeling well but she was at least breathing better. I continued to give her Tylenol to help her sleep.

By today (Saturday), I could tell she’s feeling better, though she does have a lingering cough. We plan on heading to Kingston for a few days to visit family. Unfortunately, I came down with a cold Wednesday night and I feel pretty miserable right now.

Khloë: 7 weeks old

Baby Girl is a growing machine! She nurses like a champ, spits up a lot, but still continues to gain weight. A few days ago she weighed just over 11 lbs. She’s still in size 1 diapers and 0-3 month clothing fits her well. A few onesies are getting snug in length and belly, but that’s probably just the brand. The onesie in the picture is one of the snug items!

7 weeks old

7 weeks old (January 21)

On the weekend I ended up having to go to the ER in Deep River for mastitis. My right breast had a swollen, hot, red patch that was incredibly painful. The night prior, I had suffered from headache, chills, fever, and sweats. I thought I was just getting sick but a friend tipped me off that it could be mastitis. The doctor took one look and said, “Yep, that’s an infection!” and wrote me a prescription for clindamycin. I have been taking the pills all week and only have another two days to go. Some of the antibiotic does enter the breastmilk, but I was assured not a significant amount. By Sunday night, poor Khloë had suffered from diarrhea all day. I only realized that’s what it was after changing the ninth dirty diaper and looked it up in a book. I quickly called TeleHealth and the nurse advised us to take her to see a doctor. So back to the ER at 9 o’ clock at night–but we were the only ones there so it was a fast trip. The doctor wasn’t worried as Khloë was still drinking and wasn’t getting dehydrated. She said just to keep an eye on the poop to make sure there’s no blood.

Pretty in pink

Pretty in pink

Dressed for church

Dressed for church

Khloë still sleeps a lot during the day. When she’s awake we play hand games or go on her play mat. She gets excited when we put her on the change table and she is definitely starting to smile at Mommy and Daddy. For such a happy girl, a few evenings a week she gets really fussy with gas pains and cries constantly. It’s hard to handle seeing her in pain and not being able to make it all better.

I don’t know how long baby acne lasts, but her face is always covered in little red splotches.