Yesterday Jonathan and I were talking after his bath and discussing his freckles. I told him that freckles are Angel kisses and an Angel must have came down and kissed him while he slept. He said they did and there were 3 angels. I asked if they had names and he said "Yes, Shimmer, Kiki and Glasses.". Ha ha! I told him before how the Angels are bowling when it storms. He said Kiki is the best bowler.
Later that night he told me that when his tooth comes out then Grandma Keeven will become the tooth fairy and bring him a quarter. He said the Angels gave her big angel wings so she can fly down to him. I asked him if Buster was with Grandma and he said "Yes, he throws the coins down and Grandma catches them to put them under the pillow but you have to sleep in your bed or Tooth Fairy Grandma will give you a rock! Do you know that Mommy?". And she uses her wand to zap the quarter under your pillow. Then Grandma returns to Heaven.
I love that the 2 of us can have conversations like this. I try to remember these special moments when the two of us are butting heads! He's a great kid with a huge heart.
Sunday, May 31, 2009
Saturday, May 30, 2009
Sorry for the delay...Z is good!
The surgery was pretty much over within 45 minutes. Dr. M came out and told me that Z had super large tonsils and aednoids and of course, fluid in both ears. He wanted him to stay over night b/c of all this and b/c he said kids w/NS can have breathing/congestion problems after a tonsilectomy. I had no clue about this. About an hour after that Z was out of recovery. They said he was in lots of pain so they gave him fentenal (sp?) to help him. He slept in my arms as I sat in a wood rocking chair for 3 hours. I was stiff, thirsty, hungry and in dire need to use the ladies room. I couldn't wake him b/c I remember how horrid this surgery is so I suffered and made sure Jason came up ASAP when he got off work.
As he slept alarms would go off when his oxygen dropped below 90 and when his heart rate was above 160. So after several dips of his oxygen going in the low 80's they gave him a mask that I held on his face. His HR would go up when he tried to wake up...he was in pain and mad. He had a low fever of 100.6 and was just plain miserable. He would only drink a few sips of water and then that was it the entire 24 hours. The night was rough but we were released the next morning at 9am. The nurse forgot to give us his ear drops and when I called she said, "Can you swing by and get them?". Um no...you see I live 45 min from the hospital and my baby just had surgery. No thanks! So she called in an RX and when I went to get it at 6pm it was $100! I cried and said "Sorry I can't get it!". I called the nurse and luckily they still had it so I made the 45 min drive to get them.
Z would have wakeful moments and finally started drinking when he saw Jonathan's capri sun. LOL He ran a fever of 100.9 and we were told if it was higher than 101 to take him to the ER. We dodged that bullet. He finally showed some normalcy today for about 3 hours. Otherwise he clings to me and whimpers. Fever has been under 100 and he is gladly taking fluids. Last night he woke up and laid there staring at me w/his big blue eyes. My gosh it breaks my heart. He looked so tiny and like he may have lost a pound or 2. He is only eating cheese, tiny bits of ice cream and that is really it.
I hope he has more good moments tomorrow as I have to go back to work on Monday. It kills me so it may only be a half day if he is still clingy. But they warned us he may bleed and he hasn't so that is great.
Now in the hospital he was snoring and sounded a bit congested. The doctor told me that if he still snored then he would need to have a sleep study done. I am hoping he is just swollen. *fingers crossed*
Prior to his surgery he has been crawling on all 4s more often and he starts PT on Thursday. I just hope my house is clean by then. Ha ha ha! Doubt it!
Sorry for the delay and thank you everyone for your prayers!!!
As he slept alarms would go off when his oxygen dropped below 90 and when his heart rate was above 160. So after several dips of his oxygen going in the low 80's they gave him a mask that I held on his face. His HR would go up when he tried to wake up...he was in pain and mad. He had a low fever of 100.6 and was just plain miserable. He would only drink a few sips of water and then that was it the entire 24 hours. The night was rough but we were released the next morning at 9am. The nurse forgot to give us his ear drops and when I called she said, "Can you swing by and get them?". Um no...you see I live 45 min from the hospital and my baby just had surgery. No thanks! So she called in an RX and when I went to get it at 6pm it was $100! I cried and said "Sorry I can't get it!". I called the nurse and luckily they still had it so I made the 45 min drive to get them.
Z would have wakeful moments and finally started drinking when he saw Jonathan's capri sun. LOL He ran a fever of 100.9 and we were told if it was higher than 101 to take him to the ER. We dodged that bullet. He finally showed some normalcy today for about 3 hours. Otherwise he clings to me and whimpers. Fever has been under 100 and he is gladly taking fluids. Last night he woke up and laid there staring at me w/his big blue eyes. My gosh it breaks my heart. He looked so tiny and like he may have lost a pound or 2. He is only eating cheese, tiny bits of ice cream and that is really it.
I hope he has more good moments tomorrow as I have to go back to work on Monday. It kills me so it may only be a half day if he is still clingy. But they warned us he may bleed and he hasn't so that is great.
Now in the hospital he was snoring and sounded a bit congested. The doctor told me that if he still snored then he would need to have a sleep study done. I am hoping he is just swollen. *fingers crossed*
Prior to his surgery he has been crawling on all 4s more often and he starts PT on Thursday. I just hope my house is clean by then. Ha ha ha! Doubt it!
Sorry for the delay and thank you everyone for your prayers!!!
Tuesday, May 26, 2009
12 hours and counting
Tomorrow we are to arrive at the hospital at 7am. I believe Zachary's surgery is scheduled for 9am but who knows if it will be earlier or later. I am told the surgery can take up to 2 hours...that is what my paper says but I think that can change. If memory serves me correctly, in previous surgeries they let him wake up in the post-op room, let us come in and then when he is stable we move to a private recovery room. They said to plan on being there most of the day and he may stay the night due to his size.
Little Z is sleeping peacefully, unaware of what is about to happen tomorrow. Jonathan is off w/aunt Debbie and he gave his baby brother a kiss goodbye and told him to have fun.
Obviously I am worried b/c it is my tiny baby going under yet, once again and that always causes anyone a bit of anxiety. I know it is just tonsils, adenoids and tubes and I want to believe that it will be just that with Zachary. But of course his past medical woes come into play and freak me out. I can't shake it all. I vividly recall when he got his broviac line put in and I walked into the post-op room and saw my sweet baby red, red as could be and his heart rate was over 200 and his temp was over 104. The nurses kept asking if anyone was with me. No, I came alone. We had been down this road so many times and I felt I could do it alone. Man was I wrong! However, all surgeries after that were fine. He had no repeat of that...thank goodness.
Zachary is a very lucky little boy, he has his special guardian angel, Grandma K looking after him. I know Mom will protect him and keep him safe and everything will go just fine. She has done a pretty great job so far and I know it will continue.
Not sure if the hospital has Wifi or if I'll even bring my laptop so if you don't hear from me until tomorrow, don't be worried. I want to thank all of my wonderful friends and family for all the prayers coming our way. I know Z will be fine but I'll still worry!
Little Z is sleeping peacefully, unaware of what is about to happen tomorrow. Jonathan is off w/aunt Debbie and he gave his baby brother a kiss goodbye and told him to have fun.
Obviously I am worried b/c it is my tiny baby going under yet, once again and that always causes anyone a bit of anxiety. I know it is just tonsils, adenoids and tubes and I want to believe that it will be just that with Zachary. But of course his past medical woes come into play and freak me out. I can't shake it all. I vividly recall when he got his broviac line put in and I walked into the post-op room and saw my sweet baby red, red as could be and his heart rate was over 200 and his temp was over 104. The nurses kept asking if anyone was with me. No, I came alone. We had been down this road so many times and I felt I could do it alone. Man was I wrong! However, all surgeries after that were fine. He had no repeat of that...thank goodness.
Zachary is a very lucky little boy, he has his special guardian angel, Grandma K looking after him. I know Mom will protect him and keep him safe and everything will go just fine. She has done a pretty great job so far and I know it will continue.
Not sure if the hospital has Wifi or if I'll even bring my laptop so if you don't hear from me until tomorrow, don't be worried. I want to thank all of my wonderful friends and family for all the prayers coming our way. I know Z will be fine but I'll still worry!
Thursday, May 21, 2009
18 Months Old
Today Zachary is 18 months old. Yesterday we took him in for his 18 month check up and since he is on a delayed schedule for his vaccines he got 4 shots! He cried at shot #2 and stopped at #4. What a guy! He weighs (with clothes on) about 20lbs and 6ozs. He was 31 and 3/4" long and doing well. He showed off for Dr. Kate and tried so hard to give her kisses. He goes back in 6 weeks for 4 more shots. She was very impressed with the number of words he is saying and that he could sign "more". He just started that a few weeks ago.
Today we saw Dr. Rob (aka Oncologist) and his staff was thrilled to see how big Z was and how well he was doing. We talked a bit about Noonan Syndrome and how it can cause the JMML-like symptoms. Dr. Rob agreed that is what it was with Z but didn't want to dismiss anything. He told me that even the percentage is very low, in some cases the JMML will "reappear" before the age of 5. He called me around 3pm to tell me that Z's CBC was great! All normal! Since this CBC was normal he felt that Z just needs to have his liver and spleen checked every 4-6 months. The pediatrician can do it. We basically can cut Dr. Rob out of Z's team of doctors. This made me sad. I know that we got very lucky when Dr. Rob and Dr. Bob were assigned to Zachary. If it weren't for him, I am not sure where we'd be. Thank God we were led to them.
On his 18 month birthday we got this amazingly wonderful news. It seems life can't really get any better. Dr. Rob and I both feel that the worst is behind Zachary and after his surgery next week, I think things are going to be incredible. It's like the past 2 years have had more downs than ups and while it has been getting better I just kept waiting for the other shoe to drop. I've been living under a JMML cloud waiting for one of the tests to come back with bad news. But Zachary has been spared. My precious little boy has taught me so much. His strength has amazed me and finally after all this time he is getting the good news he deserves. He has been through so much in his little life and I hope that now I can all breathe a little easier and stop looking over my shoulder for bad news.
Thank you to everyone for the prayers and support. We all thank you!
Today we saw Dr. Rob (aka Oncologist) and his staff was thrilled to see how big Z was and how well he was doing. We talked a bit about Noonan Syndrome and how it can cause the JMML-like symptoms. Dr. Rob agreed that is what it was with Z but didn't want to dismiss anything. He told me that even the percentage is very low, in some cases the JMML will "reappear" before the age of 5. He called me around 3pm to tell me that Z's CBC was great! All normal! Since this CBC was normal he felt that Z just needs to have his liver and spleen checked every 4-6 months. The pediatrician can do it. We basically can cut Dr. Rob out of Z's team of doctors. This made me sad. I know that we got very lucky when Dr. Rob and Dr. Bob were assigned to Zachary. If it weren't for him, I am not sure where we'd be. Thank God we were led to them.
On his 18 month birthday we got this amazingly wonderful news. It seems life can't really get any better. Dr. Rob and I both feel that the worst is behind Zachary and after his surgery next week, I think things are going to be incredible. It's like the past 2 years have had more downs than ups and while it has been getting better I just kept waiting for the other shoe to drop. I've been living under a JMML cloud waiting for one of the tests to come back with bad news. But Zachary has been spared. My precious little boy has taught me so much. His strength has amazed me and finally after all this time he is getting the good news he deserves. He has been through so much in his little life and I hope that now I can all breathe a little easier and stop looking over my shoulder for bad news.
Thank you to everyone for the prayers and support. We all thank you!
Monday, May 11, 2009
May Madness
We had a busy few days but very enjoyable. We went to Iowa for Jason's Grandpa's 90th birthday and had a nice visit. While there Zachary showed off and proved to his Mommy that he is going to meet and surpass the goals that the physical therapist had set for him. First he climbed up the steps and back down on his tummy...Yay Z! He then crawled on all fours but he kept his head down and dragged his forehead along the ground. LOL Funny little man! I guess because he hadn't seen Great Grandma and Grandpa since November he had to show off for them! I am so glad my kids are blessed with knowing their great grandparents and are creating memories that will last a lifetime! All kids should be so lucky!
Today we went back down to Glennon to see the ENT. They did another hearing test and Z failed. We suspect it was because it was near nap time and the fluid in his ears. The ENT agreed that he felt Z had sleep apnea. His tonsils were swollen still and he said they were rather large for his age. He said we could do a sleep study or just skip the sleep study and do the tubes and remove the tonsils and adenoids. I opted for the latter simply because we are all pretty sure the tonsils need to come out and it would save us time from work and money. In the end, I am sure he would have needed the surgery so we might as well omit the study. The surgery is scheduled for May 27th. Now I have to wait and worry.
Today we went back down to Glennon to see the ENT. They did another hearing test and Z failed. We suspect it was because it was near nap time and the fluid in his ears. The ENT agreed that he felt Z had sleep apnea. His tonsils were swollen still and he said they were rather large for his age. He said we could do a sleep study or just skip the sleep study and do the tubes and remove the tonsils and adenoids. I opted for the latter simply because we are all pretty sure the tonsils need to come out and it would save us time from work and money. In the end, I am sure he would have needed the surgery so we might as well omit the study. The surgery is scheduled for May 27th. Now I have to wait and worry.
Thursday, May 7, 2009
Fifth's Disease
As if the boy hasn't had enough issues he ends up with Fifth's Disease. I was so proud that we were 3 full weeks w/o a trip to the pediatrician's office and he woke up from his nap on Tuesday with a beat red face and inside the red was a lacey rash. My first thought was that he had measles, mumps or rubella because this is one shot he has not had yet. But nope, just fifth's disease that is a virus that really doesn't do much unless your newly pregnant or already have a compromised immune system. Most people have had it and do not even realize it. We saw Dr. M. and she also pointed out his left ear was red. I told her we go Monday to see the ENT at Glennon on Monday. So she said if he got to feeling worse before then to give her a call.
While we were at this appointment my niece/sitter, Chelsea, was at her appt. She is 36 weeks pregnant and they said she is 4cm dialated! DOH! I told her that I did not want Jonathan delivering her baby...ha ha ha. She is very brave and acted like it was no big deal. If this was me, I'd be sitting in the hospital parking lot w/my bags. Hopefully this little boy won't make his debut too fast!
I met with First Seps yesterday afternoon too. Z will have PT once a month and our 6 month goals are to have him walking and crawling up steps. I selected a therapist and hopefully she can fit our schedule. A friends sister in law works with her and when I realized the school she worked at I asked if I could have her. Fingers crossed she can take us on.
After dinner Jonathan and I went w/my sister Debbie and her family to my mom's grave. Mother's day is just a little hard. Mom is buried at a National Cemetery and this place is huge and gorgeous...I know sounds strange. I mean it is just breath-taking and so serene. It was about 7pm and on our way out we saw a cluster of 8 deer! They were all over. I bet we saw about 30 of them! They were not afraid and let Debbie get really close to take a picture. They just seemed so relaxed and peaceful and they were watching us! Jonathan said he wanted to catch one of them! Yikes! I knew that mom was watching these deer and she was at peace. I think any future visits to mom will be in the evening so we can watch the deer.
Well I better go. I have to get ready for the day!
While we were at this appointment my niece/sitter, Chelsea, was at her appt. She is 36 weeks pregnant and they said she is 4cm dialated! DOH! I told her that I did not want Jonathan delivering her baby...ha ha ha. She is very brave and acted like it was no big deal. If this was me, I'd be sitting in the hospital parking lot w/my bags. Hopefully this little boy won't make his debut too fast!
I met with First Seps yesterday afternoon too. Z will have PT once a month and our 6 month goals are to have him walking and crawling up steps. I selected a therapist and hopefully she can fit our schedule. A friends sister in law works with her and when I realized the school she worked at I asked if I could have her. Fingers crossed she can take us on.
After dinner Jonathan and I went w/my sister Debbie and her family to my mom's grave. Mother's day is just a little hard. Mom is buried at a National Cemetery and this place is huge and gorgeous...I know sounds strange. I mean it is just breath-taking and so serene. It was about 7pm and on our way out we saw a cluster of 8 deer! They were all over. I bet we saw about 30 of them! They were not afraid and let Debbie get really close to take a picture. They just seemed so relaxed and peaceful and they were watching us! Jonathan said he wanted to catch one of them! Yikes! I knew that mom was watching these deer and she was at peace. I think any future visits to mom will be in the evening so we can watch the deer.
Well I better go. I have to get ready for the day!
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