Many of you have posted or emailed me requesting Maxwell's clothing size, so I thought I would just post it here. :)
He is definitely growing and looking good these days! He now weighs nineteen pounds! :) YAY! His clothing size changes a bit based on the brand. For the most part, he is in the 12 - 18 month size. (I tend to keep his clothes on the looser side so I can get to his Gtube easier.) I know that GAP /Osh Kosh pants tend to run large (for Max), so he is in the smaller size for that...usually 6 - 9 or 6-12 months.
Thanks for caring so much about this precious lil' man. It really warms my heart knowing how many lives he has touched. :)
Saturday, October 28, 2006
CHECK, CHECK, CHECK...
Yep, we are checking "tricks" off of Mighty Maxwell's goal list every day! So fast that it is hard for his therapists to keep track of all his accomplishments! I am absolutely stunned with his progress...so proud of my lil' man!!!
His sign language teacher (who also helps in general communication skills) checked off FOURTEEN tricks. How cool is that??? She was completely blown away! And she was so impressed with how attentive he was being with me. :) (Love that!) Every time he does his trick, he looks to me for his praise. Sooooo cute!
Some highlights from his latest tricks include...
1) Putting things IN a bucket. This is HUGE! He has been able to take them OUT for quite some time, but he wasn't moving on to the next milestone very quickly. And now he loves doing it. I told him that once he can walk, he can help me clean up his toys! hee hee :)
2) Rolling TO me. If I sit about five feet away from him and encourage him, he will happily roll to me. So cute! This purposeful rolling is big progress.
3) Taking turns in conversation! I love this trick so much! I will "Ba ba da da" and he will then make sounds...and so on and so on and so on. He won't necessarily imitate the exact sounds but he will converse! And sometimes he will actually imitate the "ooooooohhhh" sound or the raspberry making.
I love this trick because it is so reassuring that he wants to communicate...he is a VERY social boy! That is important to me!
4) Initiating a game. This is one of my VERY favorites!!!
When we drive to Seattle, it is supposed to take less than two hours but often times, but often times it takes much longer because he is cranky or needs medical intervention (i.e. oxygen, tube feeding change, etc.) To calm him down, I will pull over and play with the lights above his seat...he is absolutely fascinated with lights (most hard of hearing children are). I cover the lights on and off with my hand and make a firetruck sound. He LOVES this. Well on our latest trip to Seattle, we had many, many stops and soon enough he decided he could tell me to do the light game. He would raise his hand (imitating me) and I would then do the lights. We did this over and over and over again. It was awesome. This is the first game he has ever initiated.
This trick continued when we arrived home. As soon as he noticed our ceiling light, he raised his hand for me to do the game. (Generalization is another important milestone.) So of course I have spent much time now flicking the light switch on and off. I called over Eliz and several friends yesterday to show off our new trick!!! :)
This was on our way home from Seattle and he was absolutely exhausted and not very happy. But yet he still played the game with me. Not with much spirit as you can see...but still he got the concept!
* We have many more tricks to share, but I have a lot of things to do this morning so I best run. Have a great day everyone and who knows what new things Max will do today!?!? :)
His sign language teacher (who also helps in general communication skills) checked off FOURTEEN tricks. How cool is that??? She was completely blown away! And she was so impressed with how attentive he was being with me. :) (Love that!) Every time he does his trick, he looks to me for his praise. Sooooo cute!
Some highlights from his latest tricks include...
1) Putting things IN a bucket. This is HUGE! He has been able to take them OUT for quite some time, but he wasn't moving on to the next milestone very quickly. And now he loves doing it. I told him that once he can walk, he can help me clean up his toys! hee hee :)
2) Rolling TO me. If I sit about five feet away from him and encourage him, he will happily roll to me. So cute! This purposeful rolling is big progress.
3) Taking turns in conversation! I love this trick so much! I will "Ba ba da da" and he will then make sounds...and so on and so on and so on. He won't necessarily imitate the exact sounds but he will converse! And sometimes he will actually imitate the "ooooooohhhh" sound or the raspberry making.
I love this trick because it is so reassuring that he wants to communicate...he is a VERY social boy! That is important to me!
4) Initiating a game. This is one of my VERY favorites!!!
When we drive to Seattle, it is supposed to take less than two hours but often times, but often times it takes much longer because he is cranky or needs medical intervention (i.e. oxygen, tube feeding change, etc.) To calm him down, I will pull over and play with the lights above his seat...he is absolutely fascinated with lights (most hard of hearing children are). I cover the lights on and off with my hand and make a firetruck sound. He LOVES this. Well on our latest trip to Seattle, we had many, many stops and soon enough he decided he could tell me to do the light game. He would raise his hand (imitating me) and I would then do the lights. We did this over and over and over again. It was awesome. This is the first game he has ever initiated.
This trick continued when we arrived home. As soon as he noticed our ceiling light, he raised his hand for me to do the game. (Generalization is another important milestone.) So of course I have spent much time now flicking the light switch on and off. I called over Eliz and several friends yesterday to show off our new trick!!! :)
This was on our way home from Seattle and he was absolutely exhausted and not very happy. But yet he still played the game with me. Not with much spirit as you can see...but still he got the concept!
* We have many more tricks to share, but I have a lot of things to do this morning so I best run. Have a great day everyone and who knows what new things Max will do today!?!? :)
Friday, October 27, 2006
TOLERATING SUCTIONING??? WOO HOO!!! :)
Maxwell has been very congested lately and needing a lot of suctioning...I mean A LOT! (With his narrow nasal passages, you have to keep them open as much as possible.)
But you know what? I'm not complaining because he isn't complaining. :) This kiddo is unbelievably amazing! He actually is now letting me suction his nose with NO crying!!! I have done it to myself just to see what it feels like and it's not fun. But yet Mighty Maxwell tolerates it like a champ! I have to do lots of funny faces when I am suctioning for him to be ok with it, but hey, whatever works! :) He truly is amazing.
The other night he was having such a difficult time breathing in his sleep. Then he started coughing so hard that he was crying miserably. So once I calmed him down, I went to suction him and he actually fell right back to sleep during the process. I was even able to give him all three of his inhalers...and he didn't fuss at all about it.
I hope this new "acceptance" phase is here to stay...loving, loving, loving it!!! :)
Just for proof of how cool this kid is, I had my mom take some photos of him sleeping through all of this!
But you know what? I'm not complaining because he isn't complaining. :) This kiddo is unbelievably amazing! He actually is now letting me suction his nose with NO crying!!! I have done it to myself just to see what it feels like and it's not fun. But yet Mighty Maxwell tolerates it like a champ! I have to do lots of funny faces when I am suctioning for him to be ok with it, but hey, whatever works! :) He truly is amazing.
The other night he was having such a difficult time breathing in his sleep. Then he started coughing so hard that he was crying miserably. So once I calmed him down, I went to suction him and he actually fell right back to sleep during the process. I was even able to give him all three of his inhalers...and he didn't fuss at all about it.
I hope this new "acceptance" phase is here to stay...loving, loving, loving it!!! :)
Just for proof of how cool this kid is, I had my mom take some photos of him sleeping through all of this!
Max's room can look like a mini hospital at times...that's his oximeter and stethoscope on our left, suction machine on the right, and oxygen tubing by my leg.
(Oh, and please excuse the dirty socks...just took out the trash in my socks! Opps!)
How cute and cuddly is my lil' man...even when receiving an inhaler???
Thursday, October 26, 2006
WANT TO JOIN THE MIGHTY MAX GUILD?
Time for guild membership renewal at Children's Hospital!
As most of you know, we started The Mighty Maxwell Guild earlier this year to celebrate Max's life and support the work of Children's Hospital. The guild helps provide much needed funds for the Uncompensated Care Fund.
Children's never turns down a child because of a family's financial constraints. This fund ensures that each and every child has access to quality health care. I think that is truly remarkable and want to do everything I can to help their efforts, and I hope you will join us! :)
We would love your support of Max's guild by joining as a member. The membership levels are as follows:
Basic Membership - $20
Babino Membership - $100 - $999
Life Membership (one time only payment) - $1000
Senior Citizens - $10 Junior Guild (ages 18 and younger) - $10
If you are interested, please email me (amysmckinley@aol.com) your contact information, and I can send you the envelope. Or you can simply mail me the check directly and I will turn in all the checks together.
*If you are already a guild member, please send in your dues to renew your membership for the upcoming year.
Thank you very much for your support of The Mighty Maxwell Guild. Together, we can help some truly wonderful children. :)
As most of you know, we started The Mighty Maxwell Guild earlier this year to celebrate Max's life and support the work of Children's Hospital. The guild helps provide much needed funds for the Uncompensated Care Fund.
Children's never turns down a child because of a family's financial constraints. This fund ensures that each and every child has access to quality health care. I think that is truly remarkable and want to do everything I can to help their efforts, and I hope you will join us! :)
We would love your support of Max's guild by joining as a member. The membership levels are as follows:
Basic Membership - $20
Babino Membership - $100 - $999
Life Membership (one time only payment) - $1000
Senior Citizens - $10 Junior Guild (ages 18 and younger) - $10
If you are interested, please email me (amysmckinley@aol.com) your contact information, and I can send you the envelope. Or you can simply mail me the check directly and I will turn in all the checks together.
*If you are already a guild member, please send in your dues to renew your membership for the upcoming year.
Thank you very much for your support of The Mighty Maxwell Guild. Together, we can help some truly wonderful children. :)
Wednesday, October 25, 2006
NEXT SURGERY PLANNED
Maxwell had his testicular ultrasound on Monday, and we met with the urology specialist on Tuesday to review the results.
The specialist was absolutely amazing. He was very informative and thorough (and very funny too!). He determined that Maxwell will indeed need surgery to bring down his testicles. Fortunately they are both present, they simply need brought down. The surgery is fairly simple but will require general anesthesia, intubation, etc. Most kiddos would be able to go home the same day but with Max's lungs and heart condition, he will probably have to spend the night...hopefully just one night!
Another issue we discussed was circumcision. With all that Maxwell has endured, I didn't want to put him through another procedure that was not medically necessary. However, the doctor brought up a good point that was difficult to hear but important to consider. He thinks this procedure would be a good precautionary measure should Maxwell need long term care. As much as I don't think that is going to happen (you gotta be optimistic), I suppose it is better to plan for the worse. Additionally, Max has some other minor issues "down there" that need surgical repair...so we will be taking care of all of this at one time.
The surgery is not until February. Of course I have been trained well by the doctors and immediately started racking my brain for any other procedures we could combine with this one since he will already be under anesthesia. The specialist laughed at how I was already thinking ahead on that one! :) I am going to check with a few of his other doctors...I think ENT will definitely want to check out at least his nose and ears.
The specialist was absolutely amazing. He was very informative and thorough (and very funny too!). He determined that Maxwell will indeed need surgery to bring down his testicles. Fortunately they are both present, they simply need brought down. The surgery is fairly simple but will require general anesthesia, intubation, etc. Most kiddos would be able to go home the same day but with Max's lungs and heart condition, he will probably have to spend the night...hopefully just one night!
Another issue we discussed was circumcision. With all that Maxwell has endured, I didn't want to put him through another procedure that was not medically necessary. However, the doctor brought up a good point that was difficult to hear but important to consider. He thinks this procedure would be a good precautionary measure should Maxwell need long term care. As much as I don't think that is going to happen (you gotta be optimistic), I suppose it is better to plan for the worse. Additionally, Max has some other minor issues "down there" that need surgical repair...so we will be taking care of all of this at one time.
The surgery is not until February. Of course I have been trained well by the doctors and immediately started racking my brain for any other procedures we could combine with this one since he will already be under anesthesia. The specialist laughed at how I was already thinking ahead on that one! :) I am going to check with a few of his other doctors...I think ENT will definitely want to check out at least his nose and ears.
