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Tuesday, April 30, 2013
Monday, April 29, 2013
Those Darn Ear Tubes
Lyla's ears were just not clearing up like the ENT had hoped they would. So Dr. Brodsky took out Lyla's ear tubes today right in the office. WITH OUT ANY MEDICATION!!!! Oh My!!! If she had any anesthesia for this procedure her heart surgery would have to be postponed. Really we had no choice as her window for heart surgery is getting smaller and smaller the longer we wait. So Lyla was her usual TROOPER self. Yes, it was not pleasant but she did so GOOD!!! My oh My I am so proud of this girl. She is so so so so so STRONG!!!! AMAZING!!!!!
Lyla will continue the IV antibiotics for 1 more week. I had posted how much I disliked administering the antibiotic via the PICC line. Well now it's just part of our day. Isn't it amazing how that works????
The cardiac surgeon wants her to be off the antibiotic for 1 week prior to heart surgery. He also wants her symptom free for that same 1 week she is off the meds!!! PLEASE PRAY that is will be the case!!!!! Thank you :)
Here is a picture of the warrior princess just 2 hours after her procedure. Can you tell???
Really, could that smile be any Brighter????? My goodness that girl is something so SPECIAL!!!!!
Lyla will continue the IV antibiotics for 1 more week. I had posted how much I disliked administering the antibiotic via the PICC line. Well now it's just part of our day. Isn't it amazing how that works????
The cardiac surgeon wants her to be off the antibiotic for 1 week prior to heart surgery. He also wants her symptom free for that same 1 week she is off the meds!!! PLEASE PRAY that is will be the case!!!!! Thank you :)
Here is a picture of the warrior princess just 2 hours after her procedure. Can you tell???
Really, could that smile be any Brighter????? My goodness that girl is something so SPECIAL!!!!!
Thursday, April 25, 2013
Tuesday, April 23, 2013
On The Job
Owen wanted to wear a tie today for Kindergarten Graduation pictures. He chose his outfit. He was so proud and so excited.
Right before he left for school this morning he said:
OH MY!!!!
I LOVE "On the job"!!!!
I Love this Handsome Devil so very much!!!!!!
Right before he left for school this morning he said:
"I don't think they will know who I am, they will probably think I am on the job"
OH MY!!!!
I LOVE "On the job"!!!!
I Love this Handsome Devil so very much!!!!!!
Friday, April 19, 2013
Thursday, April 18, 2013
HE Reminds me
Lyla was admitted to Children's Hospital of Buffalo on Monday. Her ears were just not clearing up and she requires IV antibiotics. She was admitted to have a picc line placed. We were discharged yesterday - THANK GOD!!!!
A very nice nurse gave me a lesson on antibiotic administration via the picc line yesterday in the hospital. Then a visiting nurse came to the house for the first dose. I have given three doses at home. I don't like it!! I actually HATE it!!! The thought that the antibiotic, two flushes and Heparin are all going through this line to her chest makes me physically ill. I am not going to lie. I get nauseous doing it. I feel so bad for her. Why so much for her??????
But when I am all done I remember. I remember Lyla laid in a crib for almost three years flat on her back. I remember all the children confined to cribs in orphanages around the world. I remember the children we have seen in the hospital. The children that are so very sick they can't even pick up their sweet heads. God reminds me of all this. I know it's not me reminding myself because I don't like to think of any of it. He kindly also reminds me how BLESSED we all are that Lyla is still full of energy and sometimes darn right NAUGHTY. Most children on oxygen with a picc line are very sick. So sick that "naughty" isn't even possible. This is absolutely not the case for our sweet daughter. She is so full of LIFE, LOVE, SMILES & NAUGHTINESS!!!
HE Reminds me and I sure am GRATEFUL!!!!!!!
In the hospital just SMILING away. As long as no one was touching her of course. One nurse told Lyla "I will remember you for the rest of my life". Ha Ha!!! The poor nurse just wanted to get a blood pressure. She tried EIGHT times. Lyla just wasn't up for it I guess. This nurse was so nice and handled Lyla's attitude so well.
The hospital provided us with a high chair in our room. This was a huge help. We were not allowed to leave the room and I wouldn't let Lyla crawl on the floor so we would run out of things for her to do very quickly. The highchair gave her a place to sit safely, with out me being glued to her and allowed her to throw her toys from a higher level. Making for a very happy little girl!!!
Ah Ha!!! Then it was back to our normal routine once we returned home. Out for a walk!!! She LOVES IT!!!
(Thank You to the Lococo Family for this musical toy that Belle & Lyla just can't get enough of)
She sure doesn't look like a child I need to feel bad for does she?
A very nice nurse gave me a lesson on antibiotic administration via the picc line yesterday in the hospital. Then a visiting nurse came to the house for the first dose. I have given three doses at home. I don't like it!! I actually HATE it!!! The thought that the antibiotic, two flushes and Heparin are all going through this line to her chest makes me physically ill. I am not going to lie. I get nauseous doing it. I feel so bad for her. Why so much for her??????
But when I am all done I remember. I remember Lyla laid in a crib for almost three years flat on her back. I remember all the children confined to cribs in orphanages around the world. I remember the children we have seen in the hospital. The children that are so very sick they can't even pick up their sweet heads. God reminds me of all this. I know it's not me reminding myself because I don't like to think of any of it. He kindly also reminds me how BLESSED we all are that Lyla is still full of energy and sometimes darn right NAUGHTY. Most children on oxygen with a picc line are very sick. So sick that "naughty" isn't even possible. This is absolutely not the case for our sweet daughter. She is so full of LIFE, LOVE, SMILES & NAUGHTINESS!!!
HE Reminds me and I sure am GRATEFUL!!!!!!!
So so so so HAPPY!!!!
She sure doesn't look like a child I need to feel bad for does she?
Saturday, April 13, 2013
Friday, April 5, 2013
Silly Mom - Stairs are for Kids!!!!!
Lyla completely mastered stair climbing three days ago. I have followed her up the stairs at least a million times. I gather her up at the top and bring her back down so she can immediately do it again. WHERE DOES SHE FIND THE ENERGY??????
Well, here is the best part of the story. About 15 minutes ago I decided not to bring her right back down. To be honest my legs are killing me and the thought of taking the stairs again was just too much. So I figured I would see where she would explore instead. Oh my, it sure was interesting to see where she would go. I still can't believe it and I have a picture to prove it!!!
She went right to Owen's bed. Put her strawberry down. Climbed up. Laid down. and FELL RIGHT TO SLEEP!!!!!
WHAT?????????????????????? Was this always her destination????????????????????????
Is this where she was just trying to go for a nice nap??????? I tried rocking her, singing to her, everything I could to get her to take her nap today. BUT NOPE, she just kept heading to the stairs!!!
That little stinker that I love desperately got me real good with this one!!!
Well it is good to know that all this extreme stair climbing is wearing her out if even just a little!!!
LOVE THIS GIRL and after the pain settles I will probably be very grateful to her for my new legs!!!!!
Well, here is the best part of the story. About 15 minutes ago I decided not to bring her right back down. To be honest my legs are killing me and the thought of taking the stairs again was just too much. So I figured I would see where she would explore instead. Oh my, it sure was interesting to see where she would go. I still can't believe it and I have a picture to prove it!!!
She went right to Owen's bed. Put her strawberry down. Climbed up. Laid down. and FELL RIGHT TO SLEEP!!!!!
WHAT?????????????????????? Was this always her destination????????????????????????
Is this where she was just trying to go for a nice nap??????? I tried rocking her, singing to her, everything I could to get her to take her nap today. BUT NOPE, she just kept heading to the stairs!!!
That little stinker that I love desperately got me real good with this one!!!
Well it is good to know that all this extreme stair climbing is wearing her out if even just a little!!!
LOVE THIS GIRL and after the pain settles I will probably be very grateful to her for my new legs!!!!!
Thursday, April 4, 2013
The Best Hug EVER!!!!!!!!!!!!!!!
Belle had just woken up. She walked out of the bedroom but stopped when she reached her sister in the hall. She dropped to her bum, scooted close and put one leg over Lyla's head so she could give her a Big Beautiful Hug!!!
I Imagine Heaven to be a lot like this!!!!!!!!
Wednesday, April 3, 2013
Monday, April 1, 2013
Long Overdue Updates!!!
I have neglected this poor blog and I am sorry!!! These updates are long overdue!!!
Early February Taylor was diagnosed with Protein S deficiency and her Pediatrician thought she might of had a stroke. She had an MRI and it was negative. Tay also went to a neurologist and he was confident that she didn't have a stroke. THANK GOD!!!! So the protein S deficiency will be controlled with medication by a hematologist.
Taylor turned 19 in February. How am I the mother of a 19 year old???
We had the whole Belle blood scare. UGH!!! She will have another CBC this Saturday in hopes that her white blood cell count has gone up. If it hasn't I think the next step is to consult with an oncologist.
Conor turned 18 in March. OH MY!!!
Taylor left for Ukraine March 5th. Since this was the fifth time she has left for Ukraine it was much easier this time. We do Miss her something awful though.
Lyla's surgery was cancelled. This was a good thing. For many reasons. First the anesthesiologist told us it might be a "soft call" but she was not comfortable with the way Lyla's lungs sounded. A few weeks prior they had a little girl ready for heart surgery. The anesthesiologist listened to her lungs (sounded the same as Lyla) and felt comfortable putting her to sleep for the big surgery. When they put the breathing tube in this little girl it flooded with secretions. Her oxygen dropped to the 20's. They had to stop everything and get this little girl breathing again. The anesthesiologist was very honest with us. She explained that if this happened with Lyla they wouldn't be able to get the tube out and she would drown. She would DIE!!! Really, I didn't even need this story to walk away comfortable but the story made me realize so quickly how GOD was all over this. You can't tell me that little girl didn't save Lyla's life!!! YOU CAN'T!!! HIS PLAN!!! THANK YOU JESUS!!!!!
Then on the way home from the hospital I decided to call the ENT for ear culture results that were taken from Belle and Lyla the week before. ARE YOU READY FOR THIS????? Both girls cultures grew E-Coli. UGH!!! The ENT and our Pediatrician had never even heard of such a thing. So they decided to re culture the girls.
Prior to the second culture Lyla got very sick. (THANK YOU AGAIN ANESTHESIOLOGIST FOR CANCELLING SURGERY) One night I called an ambulance. I overreacted a little - YES. Lyla had been napping and she woke up choking. I now think from maybe post nasal drip that had hardened??? Well she turned BLUE!!! Like how she was on the plane BLUE!! No, even bluer. I called 911! They arrived with in minutes. They walked in the door and I looked at Lyla and she had returned to her normal beautiful color. So I told the ambulance we were all set and they could leave with out taking Lyla. The EMT's were so good about it. I still brought her to the ER and they diagnosed her with an upper respiratory infection. The ER Doctor couldn't tell if she had pneumonia because her lungs are so bad anyways. The chest x-ray is what they would expect for a child with a severe heart defect and Pulmonary Hypertension. She was so sick. Her cough was AWFUL!!! She was just a mess!!! Poor little Love!
Then it was time for the second culture. Both girls had pretty bad colds by this time. Uncle Mike was kind enough to go with me. Really, his job was to keep me calm. He did a great job. I started to get a little emotional and loud with the ENT and his smile reminded me to ease up. Everyone had been sick, Owen with strep, Gav with congestion and the girls with these awful colds. I was not in the best of moods and I was willing to obviously take it out on anyone. So the two ENT Doctors seemed the perfect target. Especially since I didn't think they were handling the culutres with enough urgency. But, hey that's just me! After a heated little conversation they decided to put both girls on a new compounded nasal spray and told us they would call with the culture results in a few days.
The nasal spray is a GOD SEND!!! The girls cleared up so nicely! But their sweet little ears just kept draining. I don't mean a little drainage. I mean thick yellow drainage that is so not suppose to come out of an ear.
I called the ENT every day, sometimes twice a day for the results. Finally they came back - STILL POSITIVE FOR E-COLI!!! UGH UGH UGH UGH UGH
The ENT wanted to speak with an infectious control doctor before admitting the girls for IV antibiotics. So now per the Infection Control Doctor both girls are on a new ear drop. Guess what???? IT SEEMS TO BE WORKING!!!!!!!!!!!!!!! OH THANK GOD!!!!!! Bellie's ear is completely dry!! Lyla has one dry ear and one draining a small amount compared to what it was. OH THANK GOD!!!!! You know what the ENT said to me??? She said we normally don't prescribe this ear drop because children complain of ear discomfort but I am sure your girls will do fine. WHAT????? You mean because they are non verbal????? Mama Bear - CALM DOWN!!!! I have not addressed this statement with her yet. I let it go. It is more important my two sweet girls get better first. But when they do....................................
Lyla has been so healthy for 6 days now. So full of energy and she is breathing GREAT!!! So Amazing!!! We are so grateful!!!!!!
Well that was lots of info. I hope it wasn't too much for one reading???
Oh Lyla's surgery is scheduled for May 15th! I like that it is still six weeks away!!!!
Early February Taylor was diagnosed with Protein S deficiency and her Pediatrician thought she might of had a stroke. She had an MRI and it was negative. Tay also went to a neurologist and he was confident that she didn't have a stroke. THANK GOD!!!! So the protein S deficiency will be controlled with medication by a hematologist.
Taylor turned 19 in February. How am I the mother of a 19 year old???
We had the whole Belle blood scare. UGH!!! She will have another CBC this Saturday in hopes that her white blood cell count has gone up. If it hasn't I think the next step is to consult with an oncologist.
Conor turned 18 in March. OH MY!!!
Taylor left for Ukraine March 5th. Since this was the fifth time she has left for Ukraine it was much easier this time. We do Miss her something awful though.
Lyla's surgery was cancelled. This was a good thing. For many reasons. First the anesthesiologist told us it might be a "soft call" but she was not comfortable with the way Lyla's lungs sounded. A few weeks prior they had a little girl ready for heart surgery. The anesthesiologist listened to her lungs (sounded the same as Lyla) and felt comfortable putting her to sleep for the big surgery. When they put the breathing tube in this little girl it flooded with secretions. Her oxygen dropped to the 20's. They had to stop everything and get this little girl breathing again. The anesthesiologist was very honest with us. She explained that if this happened with Lyla they wouldn't be able to get the tube out and she would drown. She would DIE!!! Really, I didn't even need this story to walk away comfortable but the story made me realize so quickly how GOD was all over this. You can't tell me that little girl didn't save Lyla's life!!! YOU CAN'T!!! HIS PLAN!!! THANK YOU JESUS!!!!!
Then on the way home from the hospital I decided to call the ENT for ear culture results that were taken from Belle and Lyla the week before. ARE YOU READY FOR THIS????? Both girls cultures grew E-Coli. UGH!!! The ENT and our Pediatrician had never even heard of such a thing. So they decided to re culture the girls.
Prior to the second culture Lyla got very sick. (THANK YOU AGAIN ANESTHESIOLOGIST FOR CANCELLING SURGERY) One night I called an ambulance. I overreacted a little - YES. Lyla had been napping and she woke up choking. I now think from maybe post nasal drip that had hardened??? Well she turned BLUE!!! Like how she was on the plane BLUE!! No, even bluer. I called 911! They arrived with in minutes. They walked in the door and I looked at Lyla and she had returned to her normal beautiful color. So I told the ambulance we were all set and they could leave with out taking Lyla. The EMT's were so good about it. I still brought her to the ER and they diagnosed her with an upper respiratory infection. The ER Doctor couldn't tell if she had pneumonia because her lungs are so bad anyways. The chest x-ray is what they would expect for a child with a severe heart defect and Pulmonary Hypertension. She was so sick. Her cough was AWFUL!!! She was just a mess!!! Poor little Love!
Then it was time for the second culture. Both girls had pretty bad colds by this time. Uncle Mike was kind enough to go with me. Really, his job was to keep me calm. He did a great job. I started to get a little emotional and loud with the ENT and his smile reminded me to ease up. Everyone had been sick, Owen with strep, Gav with congestion and the girls with these awful colds. I was not in the best of moods and I was willing to obviously take it out on anyone. So the two ENT Doctors seemed the perfect target. Especially since I didn't think they were handling the culutres with enough urgency. But, hey that's just me! After a heated little conversation they decided to put both girls on a new compounded nasal spray and told us they would call with the culture results in a few days.
The nasal spray is a GOD SEND!!! The girls cleared up so nicely! But their sweet little ears just kept draining. I don't mean a little drainage. I mean thick yellow drainage that is so not suppose to come out of an ear.
I called the ENT every day, sometimes twice a day for the results. Finally they came back - STILL POSITIVE FOR E-COLI!!! UGH UGH UGH UGH UGH
The ENT wanted to speak with an infectious control doctor before admitting the girls for IV antibiotics. So now per the Infection Control Doctor both girls are on a new ear drop. Guess what???? IT SEEMS TO BE WORKING!!!!!!!!!!!!!!! OH THANK GOD!!!!!! Bellie's ear is completely dry!! Lyla has one dry ear and one draining a small amount compared to what it was. OH THANK GOD!!!!! You know what the ENT said to me??? She said we normally don't prescribe this ear drop because children complain of ear discomfort but I am sure your girls will do fine. WHAT????? You mean because they are non verbal????? Mama Bear - CALM DOWN!!!! I have not addressed this statement with her yet. I let it go. It is more important my two sweet girls get better first. But when they do....................................
Lyla has been so healthy for 6 days now. So full of energy and she is breathing GREAT!!! So Amazing!!! We are so grateful!!!!!!
Well that was lots of info. I hope it wasn't too much for one reading???
Oh Lyla's surgery is scheduled for May 15th! I like that it is still six weeks away!!!!
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