Macsen received this “award” today from his kindergarten teacher he had last year. Bless him he keeps the school nurse so busy lol. I always giggle a little when I get the nurse note out and read why he had to visit her. Some more memorable ones were “fell out of chair,” followed the next day by “poked himself in the eye with his pencil” and “ fell under the table and hurt his elbow.” And then he has to reenact the accident 100% accurately even if it means he gets hurt a second time, or 3rd time depending on how many people he has to show. I’m going to cherish this award always lol
Wednesday, August 28, 2019
Wednesday, August 7, 2019
1st grade - Hooray
First day of school!!!! Mac is in 1st grade this year. I am so grateful he is here getting to start first grade with all his friends and peers. He missed his first day last year bc he was still in the hospital in Boston after his pacemaker surgery.
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| Getting a haircut so he looks spiffy for his first day |
Monday, August 5, 2019
Boston again
Hi Everyone!
Macsen had a pretty good summer. It was a scorcher so we didn't get any camping in. We barely went outside. The threat of flesh eating bacteria in the gulf also scared us away from the beach which makes me so sad. So we swam at the neighbors, went to a few swimming birthday parties, and spent a lot of time indoors caring for our foster kittens who needed to be bottle fed.
We went to Boston at the end of July for ch3eck ups before school. We had a rocky first 2 days in Boston - Mac got way to hot in the shuttle from the airport that wasn't climate controlled and he vomited on the bus :( That was super stressful - to us and all the other passengers on the bus. Then he was sick for 2 days and we went back and forth with his team about bringing him to the ER and admitting him for fluids. But he recovered before his appointments. He had a bone scan, labs and his usual heart scans. The great, wonderful awesome news is his BNP dropped to 241 after being over 700 in May and over 3000 in Feb. I am still waiting to hear if they think his function has improved at all. His settings - stable since they changed them in February- now had to be increased. The doctor fears bc his heart was so sick when the leads were placed last year and because they had to be placed in a precise location to resynch his heart (not just on the healthiest tissue the surgeon could find) his heart is probably making a larger amount of scar tissue under the leads. More then normal. Which means eventually they won't be able to stimulate his heart through those leads and he will have to have surgery to place new leads. That surgery was horrendous last year and I feel sick thinking he will have to get that done again. So there's that.
No news on the bone scan either.
He starts 1st grade on Wednesday though! I have had meetings with the school to make sure everyone is prepared for the miracle man Mac <3 Praying for a great teacher again this year who will help him learn and grow and also be super fun
Macsen had a pretty good summer. It was a scorcher so we didn't get any camping in. We barely went outside. The threat of flesh eating bacteria in the gulf also scared us away from the beach which makes me so sad. So we swam at the neighbors, went to a few swimming birthday parties, and spent a lot of time indoors caring for our foster kittens who needed to be bottle fed.
We went to Boston at the end of July for ch3eck ups before school. We had a rocky first 2 days in Boston - Mac got way to hot in the shuttle from the airport that wasn't climate controlled and he vomited on the bus :( That was super stressful - to us and all the other passengers on the bus. Then he was sick for 2 days and we went back and forth with his team about bringing him to the ER and admitting him for fluids. But he recovered before his appointments. He had a bone scan, labs and his usual heart scans. The great, wonderful awesome news is his BNP dropped to 241 after being over 700 in May and over 3000 in Feb. I am still waiting to hear if they think his function has improved at all. His settings - stable since they changed them in February- now had to be increased. The doctor fears bc his heart was so sick when the leads were placed last year and because they had to be placed in a precise location to resynch his heart (not just on the healthiest tissue the surgeon could find) his heart is probably making a larger amount of scar tissue under the leads. More then normal. Which means eventually they won't be able to stimulate his heart through those leads and he will have to have surgery to place new leads. That surgery was horrendous last year and I feel sick thinking he will have to get that done again. So there's that.
No news on the bone scan either.
He starts 1st grade on Wednesday though! I have had meetings with the school to make sure everyone is prepared for the miracle man Mac <3 Praying for a great teacher again this year who will help him learn and grow and also be super fun
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