It Has Been a Busy Week

I had hoped to post an update after Josh's speech assessment on Monday, but we have been busy here and I just haven't had a chance.

Josh's speech assessment went very well. He was shy of course but he handled the situation a lot better than I expected. He even managed to say 'mama' in front of the therapist and engage in some of his baby babble.

The results of the assessment is very much what I expected. He does have a language delay and will be followed by a speech therapist but he already has a strong foundation for language development in place so it's just a matter of drawing out the words. His therapist gave me a few tips on how to encourage his language development -- all things that we were already doing so it's encouraging to know that we were on the right track. She's also going to sign me up for a course of some sort for parents of children with a language delay...I think the program is called It Takes Two To Talk. The program starts in April so it will be interesting to see what that is like.

Josh also had an appointment with his pediatrician on Monday for a check-up and another set of immunizations. Josh now weighs 24 lbs and is 32 3/4 inches tall.

Around 2am on Tuesday morning Josh woke up and he felt a little warm. I turned down the heat, lightened his clothing and he fell back asleep only to awake again at 3:30am. He still felt warm so I took his temp...it wasn't bad 38.6 C...a low grade fever so I gave him some Tylenol and eventually fell back asleep.

He woke again around 7am and I knew right away that he wasn't himself. By mid-morning his temp was around 39.5 C, he wasn't eating, he didn't want to play and he was very clingy. He wouldn't even go for nap in his crib - I had to hold him as he slept or else he wouldn't sleep. Naturally I was concerned as any parent would be when their child is running a fever, but I always get this sinking feeling that what it there's a problem with his heart? I try not to let myself jump to that conclusion but I can't help it...it's the heart mom curse I guess. I should mention that the last time Josh would not sleep in his crib...as in he would sleep for hours on end in my arms but would wake the second I tried to put him down...was the weekend before he went into heart failure (which was a Monday). So no doubt that memory only added fuel to my fears.

At 1pm his fever hit 40 C. I gave him another dose of Tylenol and rechecked his temp 45 min later...40.1 C. We were just about to take him over to CHEO when I decided to call Telehealth first to see what they had to say. Telehealth told us that the fever was likely due to the immunizations he received the day before and it should subside in 2-3 days. They also said if his fever hit 40.6 C then take him to the hospital. Otherwise we were already doing everything we could to help treat his fever...Tylenol every 4 hours, dressed in light clothing, offering plenty of cold fluids.

We managed to get through the rest of the day and Wednesday he was more or less back to his usual self - thank goodness! He still had a low-moderate grade fever but was eating again and doing the regular toddler things. He woke this morning with a low grade fever, but it seems to have resolved. I'm glad that stress is done with.

Saturday February 7th kicks of CHD Awareness Week. I designed and created a bracelet in honour of Joshua and it is my hope that wearing it will help raise awareness for congenital heart defects.



The 16 blue crystals symbolize the primarily deoxygenated blood that had been circulating through his body for the first 16 days of his life before we knew about his heart defect.

The 5 purple crystals symbolize the mixing of oxygenated and deoxygenated blood that essentially kept him alive for the first 5 weeks of his life before his open heart surgery.

The 16 red crystals symbolize his 'fixed' heart - one crystal for every month since his surgery. [Okay so really I used 16 red crystals to maintain symmetry with the blue crystals but thought it was interesting that has been 16 months since his surgery. Plus that gives a total of 37 crystals which is the total number of days Josh has spent in the hospital with all three of his admissions.]

I love how the bracelet turned out and I will wear it proudly!