Making so much progress!!!
Hi everyone! I'm sorry that it has been so long since I posted anything! It seems like we live at a whirlwind pace and it is everything we can do to keep up sometimes. Hailey is doing great! Thanks to some great therapists, wonderful doctors, and all of your prayers, she continuing to make progress.
When we brought her home from Salt Lake City last April with her new trach she was so weak that she couldn't even sit up on her own, she still couldn't take anything by mouth because she still hadn't passed a swallow study, and she was still on calcium supplements due to her DiGeorge syndrome hypocalcemia (lack of calcium).
Now, 9 months later, she is scooting everywhere, babbling up a storm, playing with the other girls, swallowing liquids easily, some solids, and even starting to get some vocal words out, although that is pretty minimal at the moment. She knows 80 or so signs in sign language and definitely lets us know what she wants. She loves reading books, especially books about Clifford the Big Red Dog. She loves people! She loves going places. She is smart as can be and demonstrates it often. She does puzzles and matching. We are working on learning shapes and colors and she has most of those figured out too. She absolutely LOVES blocks and legos and plays with them constantly. Her right arm is getting a lot better, although we still do have to remind her to use it. She loves music and will dance to it pretty much any time she hears it. At church she is determined to have a hymn book so she can flip through it while everyone sings. She loves playing the piano at home so she can be like her older sisters. She will play some random notes, then pause and point to whatever music happens to be sitting on the piano. She won't resume her playing until I turn to the next page of music, which I find so adorable and so hilarious!
A couple of nights ago, she had an ear infection and was looking pretty miserable so I told the nurse I would rock her for a while to see if I could help her fall asleep. I had been rocking for about 5 minutes when Hailey broke out into a huge grin with her eyes still closed. Then, she covered her eyes and did a huge "peek-a-boo"! She looked totally fine then! She just wanted some extra mom snuggles. I did feel a little, ahem, sheepish for being so taken in...hee hee.
She has continued to get every bug that comes along, especially anything that has to do with her lungs, but thanks to the trach and lots of blessings, she has been able to pull through without having to be hospitalized. We did have one overnight stay right after New Year's just to make sure she looked all right, but she was released the next day without us having to do much more than give her fluid and a couple of antibiotics.
We, of course, have our interesting incidents now and then. A couple of weeks ago we walked into Walmart, just meeting up with my mom and sister-in-law to grab some groceries and Hailey started turning blue. I pulled a blanket out of the stroller and laid her on it. Then I grabbed the ambu-bag (one of those things with a mask that they put over your mouth and nose with a football-looking balloon that you squeeze to give breaths) and started giving her breaths through her trach. It still wasn't taking her quite back to normal, so I let the Walmart employee who had come over call the ambulance in case I couldn't get it under control. I changed her trach out right there on the floor. She immediately started getting her color back. I determined that the trach had become plugged by some of her oral secretions. Apparently that does tend to happen, especially in the cold months as everything is so much drier. It was the first time I had to perform an emergency trach change on her though and we made quite the scene. I was certainly glad my mom and sister-in-law were in the store with me. They were able to help manage the girls and all of our emergency supplies. When the paramedics arrived, I asked them to check Hailey's oxygen levels. At first she was a little low, but then she got back up to the high 90s and we were on our way. The lady at the bakery, where we happened to be when this all took place, gave Hailey a cookie (with my permission of course) and Hailey was bouncing up and down to the store music while she munched on the cookie like nothing had happened at all. We finished our shopping trip and then went home.
We will be heading to Salt Lake City soon for another trach/vent clinic where they will check Hailey's progress and see about weaning off the vent.
Hailey will be 3 in June, which means that we have to make a decision about putting her in preschool next year. It would be a special developmental preschool and I think she would love it, but part of me doesn't want to be away from her so much. She still just seems so little and I love being with her. It sounds like they are very flexible and she could go as little as 1 day a week or as many as 4 depending what we choose. I'm very torn, but I am sure we will figure out what to do. Katelyn will be in kindergarten and I think Hailey is going to go crazy with no one but me to play with!
Well, that is about it for us. Abby is growing like a little weed and wanting to play soccer this spring---gulp--. That will be my first attempt to have a child in a sport with Hailey in tow. Katelyn is going to play too, but her age-group is pretty low-key with all the time commitment limited to Saturday "games".
I will try to post some pictures, but I think I will post them separately because lately it seems like the computer has been fighting me when I try to post them together.
I am so amazed and humbled to know that so many of you still have Hailey in your thoughts and prayers after all this time. I know that you all have your own struggles, challenges, and time crunches so that really means a lot to us. Thank you all and we love you so much!
When we brought her home from Salt Lake City last April with her new trach she was so weak that she couldn't even sit up on her own, she still couldn't take anything by mouth because she still hadn't passed a swallow study, and she was still on calcium supplements due to her DiGeorge syndrome hypocalcemia (lack of calcium).
Now, 9 months later, she is scooting everywhere, babbling up a storm, playing with the other girls, swallowing liquids easily, some solids, and even starting to get some vocal words out, although that is pretty minimal at the moment. She knows 80 or so signs in sign language and definitely lets us know what she wants. She loves reading books, especially books about Clifford the Big Red Dog. She loves people! She loves going places. She is smart as can be and demonstrates it often. She does puzzles and matching. We are working on learning shapes and colors and she has most of those figured out too. She absolutely LOVES blocks and legos and plays with them constantly. Her right arm is getting a lot better, although we still do have to remind her to use it. She loves music and will dance to it pretty much any time she hears it. At church she is determined to have a hymn book so she can flip through it while everyone sings. She loves playing the piano at home so she can be like her older sisters. She will play some random notes, then pause and point to whatever music happens to be sitting on the piano. She won't resume her playing until I turn to the next page of music, which I find so adorable and so hilarious!
A couple of nights ago, she had an ear infection and was looking pretty miserable so I told the nurse I would rock her for a while to see if I could help her fall asleep. I had been rocking for about 5 minutes when Hailey broke out into a huge grin with her eyes still closed. Then, she covered her eyes and did a huge "peek-a-boo"! She looked totally fine then! She just wanted some extra mom snuggles. I did feel a little, ahem, sheepish for being so taken in...hee hee.
She has continued to get every bug that comes along, especially anything that has to do with her lungs, but thanks to the trach and lots of blessings, she has been able to pull through without having to be hospitalized. We did have one overnight stay right after New Year's just to make sure she looked all right, but she was released the next day without us having to do much more than give her fluid and a couple of antibiotics.
We, of course, have our interesting incidents now and then. A couple of weeks ago we walked into Walmart, just meeting up with my mom and sister-in-law to grab some groceries and Hailey started turning blue. I pulled a blanket out of the stroller and laid her on it. Then I grabbed the ambu-bag (one of those things with a mask that they put over your mouth and nose with a football-looking balloon that you squeeze to give breaths) and started giving her breaths through her trach. It still wasn't taking her quite back to normal, so I let the Walmart employee who had come over call the ambulance in case I couldn't get it under control. I changed her trach out right there on the floor. She immediately started getting her color back. I determined that the trach had become plugged by some of her oral secretions. Apparently that does tend to happen, especially in the cold months as everything is so much drier. It was the first time I had to perform an emergency trach change on her though and we made quite the scene. I was certainly glad my mom and sister-in-law were in the store with me. They were able to help manage the girls and all of our emergency supplies. When the paramedics arrived, I asked them to check Hailey's oxygen levels. At first she was a little low, but then she got back up to the high 90s and we were on our way. The lady at the bakery, where we happened to be when this all took place, gave Hailey a cookie (with my permission of course) and Hailey was bouncing up and down to the store music while she munched on the cookie like nothing had happened at all. We finished our shopping trip and then went home.
We will be heading to Salt Lake City soon for another trach/vent clinic where they will check Hailey's progress and see about weaning off the vent.
Hailey will be 3 in June, which means that we have to make a decision about putting her in preschool next year. It would be a special developmental preschool and I think she would love it, but part of me doesn't want to be away from her so much. She still just seems so little and I love being with her. It sounds like they are very flexible and she could go as little as 1 day a week or as many as 4 depending what we choose. I'm very torn, but I am sure we will figure out what to do. Katelyn will be in kindergarten and I think Hailey is going to go crazy with no one but me to play with!
Well, that is about it for us. Abby is growing like a little weed and wanting to play soccer this spring---gulp--. That will be my first attempt to have a child in a sport with Hailey in tow. Katelyn is going to play too, but her age-group is pretty low-key with all the time commitment limited to Saturday "games".
I will try to post some pictures, but I think I will post them separately because lately it seems like the computer has been fighting me when I try to post them together.
I am so amazed and humbled to know that so many of you still have Hailey in your thoughts and prayers after all this time. I know that you all have your own struggles, challenges, and time crunches so that really means a lot to us. Thank you all and we love you so much!
It's great to read a review of Hailey's progress. Amazing little girl and her sisters, amazing parents!
ReplyDeleteI'm so glad to read that she's been doing so great! What a blessing! We still pray for her every night, especially Jared (he never forgets! It's so cute). It is amazing all the things you guys go through! Continued prayers that Hailey will continue to make big progress and stay healthy!
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