Monday, September 29, 2008

I wanted to let everyone know I am still alive, and I do not have my computer back yet, I had to steal my kids computer to use for awhile. Mine is still at Circuit City being fixed, they found out it is the Motherboard so it is going to take a couple of weeks to fix. Just wanted to type a quick note. Logan is going to have his first play date tomorrow with Isaac YEAH! Kathy is going to come over my house. Logan does not do well outside of his own environment so I hope by having them over my house the play date will go well. I will post pictures tomorrow. Everyone is doing great. I went and spoke to the Principal and had Elizabeth pulled out of her class and put in with her sister's class which is the only class in the second grade with a special education teacher. So they will be together again this year, I hope by doing this it will help her. It has just been so hard lately with her and doing her homework taking 2-3 hours to do. Only time will tell. Sorry so short but I have to get going and give Logan a bath he has thrown up every single feed today. Will post more tomorrow.

Saturday, September 20, 2008

Sorry it has been awhile since my last post, I have been very busy around the house with the kids. Thursday we had my cousin and her husband in town from California, it was really nice to see them we had a nice visit. I just wish they lived closer. The kids are feeling alot better I think we might actually make it to Church this Sunday :)
Elizabeth is doing great, breathing so much better we just have to get rid of her cough oh and her voice is a little funny from the Steroids she was on. Alicia is also getting better I have been giving her medicine and it is helping. Logan still has a cough but his Ears are looking good. So I think we are on the right track to getting everyone healthy for the time being. Logan is still rolling over everyday as you can see above at least twice a day GOOO LOGAN!
It was so funny I put him down for a nap Friday morning and I hook him up to his tube so he is vented, I go to check on him and he pulled his Extension out of his stomach (not his G-tube) and there is milk all over the place he was so excited when I came in the room to check on him he was laughing and throwing himself around, I had to snap some shots. So needless to say this feed he did not get any of. I gave him a bath put him back down for a nap. He got up a few hours later so I feed him again and he just throws up everything I put inside of him and we take another bath. I swear we changed clothes 4 times Friday. I called the school Wednesday to leave a message for Elizabeth's Teacher so we can have a meeting about how she is doing and try and get her some extra help in school and she never called me back, So I left another message. I will be sending a note with Elizabeth to school on Monday hoping she will get this one. I will not be able to post for a couple of days I have to take my computer to Circuit City (firedog) today and get it fixed it is not even a year old and the thing keeps on shutting down by itself. We have Windows Vista and I hate it and regret buying it. So maybe sometime next year we can replace it. Hope all is well. Lots of hugs Karen

Tuesday, September 16, 2008

We went to the G.I doctor today and because Logan is still sick he wants to postpone it for another week or two. He wants his airways clear and not full of junk. Logan has lost 1 pound since the last time he was weighed last week because of all the throwing up he is doing. His speech therapist Mark from N.E.I.S came out to our house today to see how Logan is doing on his eating and he only was able to take a couple of bites, then Mark said put some on his tray and he just loved that as you can see he made a very big mess, But this was really the first time he really got to play with his food and he had a ball. I have to start doing this more often :)
He is also starting to roll over he rolled on his tummy 3 times within an hour period I was so excited. he even pulled his left leg under his stomach twice. That is so huge Yeah for Logan. Now we have to work on getting him to roll back.
Elizabeth is doing much better the steroid's is really helping her. She still looks a little sick and not eating much but her breathing has really improved. Alicia is doing the same still congested but I have been giving her Zyrtec, I am not sure if it is Allergy's or a cold.
I am doing good just very busy this week with Appt. for Elizabeth and Logan. Richard is also doing fine just tired of working all the time.
Thank you for keeping us in your prayers. Lots of love Karen

Monday, September 15, 2008

Well this has been quit an eventful weekend here at the Lee household. Elizabeth's Asthma was getting worse Saturday I was debating weather or not to take her to the Hospital because the wheezing was just getting worse. Elizabeth woke up Sunday @3am and was struggling to breath so I rushed her to Sunrise E.R. Her sats were 90, There they gave her 2 doses of Albuterol with Atrovent over a period of an hour, then gave her 2 shots of Rocephin an Antibiotic and gave us a prescription for a steroid called Prelone, did a Chest ex-ray and found out she has an pneumonia. And they sent us home they never gave her Oxygen which I think they should have and when we left Sunday her sats were still 90-93. I took her back to her pedi this morning and they tested her lung function and said yes she is wheezing but not to were we have to admit her. I was like OK you know what you are doing. So with all of this medicine she is on I am hoping she gets better real soon. They said she can return to school on Wednesday with no P.E. this week. I also had him look at Logan again because he has been so cranky and throwing up every single feed I give him so how am I to know the medicine is working to clear up his Ear Infection. He said the right ear is still red but the left one is getting better.
We go to see his G.I doc Tuesday morning for a check up and to see if he can still have his scope done this Friday because of Logan being sick I am not sure what they are going to do. He is not running a fever which I am glad. Alicia is starting to get the sniffles and a little congestion so I am doing every thing I can to help her from getting a cold.
You know when it rains it pours in my household. I better get going I have to pick up Alicia from school. Thank you everyone for your prayers and concern. Hugs Karen

Friday, September 12, 2008

First I would like to start off by saying thank you so much to all you Heart Mom's out there, You don't know how much it means to me to have support out there and to know I can always count on you gals for anything. You know exactly what I am going through and that means alot to me:) Now the fun stuff begins not really. The last two nights Logan has kept me up with his coughing it has gotten worse so I took him to the Pedi today and found out he has a double ear infection his ears are really red. No wonder he has been cranky I would be to. They gave him some Antibiotics for 10 days but nothing for his cough or runny nose, Because of his Heart they are afraid to give him anything. The cough just has to run it's course they said. Poor guy every time he coughs it's gotta hurt him.
Then Elizabeth got me up at 3am telling me she is sick and does not feel good she is the one with the Asthma. So she missed school today and I also took her to the Doc she said she has fluid in her right ear and gave her antibiotics for 5 days. She was wheezing this morning so I gave her a treatment and it did help her. Alicia is doing great no sickness yet and hopefully she will not get it. So hopefully with all these med's we can get some sleep tonight. I am so glad it is the weekend Richard will be home in the morning and I will have lots of help. Take care all and I will post some photos this weekend. Lots of hugs Karen.

Thursday, September 11, 2008

Logan had P.T. today (Wednesday) and the moment Nora walked in the door until she left he (guess what) yes cryed. We will get there some day it is just very frustrating I was in tears today I am just thinking he is 13 months old and does not even roll over (on his own). And I keep hearing from the Therapist he will get there it just takes time which I know all of this but it is just very frustrating and hard to deal with all at the same time. I guess I should just be happy he almost has 100% head/neck control which I am don't get me wrong, I know there are alot of other kids out there that are alot worse off than Logan. I have just been having a hard time lately dealing with everything it just gets to me sometimes. I know I am rambling on but thanks for listening to me complain.
Logan has been up 4x tonight so far this last time throwing up. I am rocking him after I clean him up and I look at him and he has snot all over his mouth and nose so I am hoping it is nothing. I better get going he is starting to cry again this is going to be a long night.

Tuesday, September 9, 2008

Well not much went on today, I had to go to the Hospital to register Logan for his EGD (Scope). As soon as we walk in the door the boy starts crying and did not stop until we walked out the door to leave. They did not even touch him. Poor thing has been through so much. Logan's P.T. is coming over in the morning to work with him, so I cleaned house today while he was sleeping and the girls were at school.
Elizabeth is struggling in school I am going to have to meet with the Teacher and Principal to figure out what we are going to do to help her along. Alicia is doing OK. They both have problems with Comprehension.
Richard is doing good he will be taking this weekend off so we can spend some family time together. Which I can not wait for. Other than that not much is going on around here. I will post some more photos tomorrow.

Sunday, September 7, 2008

Hope everyone had a nice weekend, Since Richard worked most of the weekend I went to my Mom's House Saturday all day while the girls got to play at there friends house next door. Of course my Mom just loves having the girls and Logan over. She gets to love on him all day. After Logan got up from his nap my Mom wanted to feed him some baby food he took 6 bits of sweet potatoes and 6 bits of Mango Fruit and that was it. But he did really good. Then I hooked him up to his feeding tube when he was just about done with that he coughed and then it was all over, He just threw everything up. He did not even cry or move he just coughed. Sometimes I wonder why I even feed the boy! Then my Mom gave him a bath in her sink which He can still fit believe it or not :). Today Logan did very good eating, he almost ate a whole jar of stage 1 baby food Pears. (he was so close to the end). He did not used to like fruit before but he does now. Fine by me as long as he eats something by mouth right....

The Girls are doing good Elizabeth's Asthma has only been acting up just a little bit which is good because it always gets worse as it gets closer to Winter. Let's hope we can keep her out of the Hospital this winter. I remember almost this time last year I had both kids in the hospital Logan for his Heart surgery and Elizabeth because of her Asthma.

Alicia is Feisty as always. And Richard just got up and is watching the Cowboys Game of course we are HUGE COWBOY FANS :) Here are some photos of Logan eating and in the bath. And today of the girls playing around.

Thursday, September 4, 2008

We just got back from the Geneticist and I wanted to post while I have everything fresh in my head. Logan has already had the normal chromosomes checked and the fish 22, when he was a baby. He does have Heterotaxy which I already new. Basically everything the doctor told me I already new so I guess that is good. I asked him allot of Heart Baby's have Di George does he look like he has it. The Doctor said he does carry some of the trates but it did not show on his fish 22 chromosome test. BUT that he could have it from his 10 chromosome. He did order some blood work to check the other chromosomes and for Di George and to see if he has anything else that will show up. That's about it. I had to call the Insurance company to see if they will cover some or any of the testing so I am waiting back to hear from them. I hear the testing is very expensive. I gave my entire history of my family and we have no idea how he got this Heart Condition, I was also told if it is a Gene problem my daughters could carry it and pass it on to there children. We just have to wait and see what the test will show. As soon as I hear from the Insurance I will take him to the Hospital and have the test done. It will take 2-3 months before I hear anything. The hard part is waiting.

Also we have an Appt for Logan to have a Scope done Sept, 19th Friday we have to be there at 6:30am at Sunrise Children's Hospital. His Gastric Doctor thinks it will be a good idea. We will be able to find out what is going on inside of his tummy.
Now all we can do is Pray.

Wednesday, September 3, 2008

Hope everyone is having a good night. Today Logan had Robert from N.E.I.S come over so he could have Therapy O.T. He was of course very cranky it was time for nap so he did not do much of anything but lay on his side back and forth. The girls are doing really good in school so far. Alicia has been getting 100% on her paper work which is great for her since she does struggle in school. Elizabeth has been struggling in school a little bit, They will be doing testing at school here pretty soon to see where she is and they will go from there as to weather they want to pull her out for special tutoring for a few hours a day, We will see. Richard went back to work Monday night after the long weekend and of course it was hard on the family. He will be driving to LAX tonight and back in the morning. He will also be working this weekend. I just feel bad that he has to work on weekends and that I can not get a part time job to help out. I am sure you ladies know how it is. Other than that there is not much going on here. I better get going so I can spend a little bit more time with Richard before he has to leave for work. Take care all. Karen
oh and also here are some more pic's of Logan from his first birthday picture taken on August 8th.

Monday, September 1, 2008

I hope everyone had a nice long weekend, we did. We all went shopping at the Mall today and got the girls a few more shirts for school. JC Penney was having an awesome sale. I go shopping every year on Labor Day and get really good deals.

I just got done feeding Logan he had about 6 bites and that was it, He started gaging so I gave up and gave him his sippy cup, He just started to hold it with both hands, well almost with both hands. He still has a hard time with that left hand. Here are some photos as I promised. My Parents came over for a little visit today. My Dad actually got to hold Logan and he didn't cry :)
Tomorrow I am taking Logan to the Chiropractor, he goes once a week and it really seems to help loosen him up. We also finally got an Appt. @ NEIS on Thursday to go see a Geneticist we had to wait 4 months which is not bad at all considering it usually takes over 6 months I was told. I am really looking forward to that maybe I can get some more of my questions answered I will let everyone know how that turns out. Have a good night. Karen