On Friday Alyssa got the idea in her head that she wanted to get her ears pierced. I told her that we would go after work.
So off we went. She sat in my lap and was brave until it came time to actually pierce the ears. She sat still while they marked her ears, cleaned them and got the ear rings ready, but as soon as they said ok she freaked out. After about 10 minutes of every bribe we could think of it ended up with me piercing one of my ears and us leaving.
We have told her that there is no round three, that she will now have to wait until she is 13.
Lets see if I keep that promise.
Monday, April 29, 2013
Thursday, April 25, 2013
Dance Recital
Tonight Alyssa had her second dance recital. She only has 2 other little girls in her class so I was worried that she would get out on stage and freeze.She did wonderful. She danced both songs watching the teacher and a big smile on her face.
She has really seemed to enjoy dance this year and we only had one week that she didn't want to go or dance.
Next year will be a little different as her best friend will not be able to do the dance with her. So we will see if she wants to continue it. I love having the dance on Thursdays because it doesn't take away from our weekend or our evenings and the class is so small. The Saturday class has about 13 girls in it and so they don't get as much time to practice or do tumbling because they have to wait their turn.I am one proud mommy of my kids. I love that they are getting old enough to do things without me, but also still young enough when it is over they want a hug and mommy time.
Wednesday, April 24, 2013
ENT Visit
Today was the visit to the ENT. This was the first time seeing her since Colin's bronchoscopy. I had spoken to her a few times on the phone and knew that she was working closely with the pulmonologist.
So I figured she already had a game plan before we walked into the office. So after waiting over an hour past our appointment time we finally got to see the doctor. She decided that we are going to try removing his adenoids and putting filler around the cleft. We are going to leave his tonsils in for now since they aren't inflamed and that would be even more trauma to his throat.
The surgery is scheduled for May 6. He will stay one night in the hospital to be monitored for swelling and issues with the filler. Hopefully he will be able to come home early the next day.
The filler only lasts 3-4 months so we will watch him and monitor his health for those few months and see if we think the surgery helped. If his breathing and other issues are greatly improved we will discuss surgery to repair the cleft.
If things do not seem improved over that time then we are back to square one and will have to try to find a new avenue to keep him healthy.
I pray this is the answer we want/need. I am so burned out. I feel so defeated. I feel so alone. I just want to see my little boy healthy and happy for more than a 5 day stretch.
I am still very nervous about the filler since there are many risks that come with it. We didn't do it in March because of the issues, and now we once again don't really have much of a choice. I just pray she has steady hands and that it doesn't do any permanent damage to his vocal cords.
So I figured she already had a game plan before we walked into the office. So after waiting over an hour past our appointment time we finally got to see the doctor. She decided that we are going to try removing his adenoids and putting filler around the cleft. We are going to leave his tonsils in for now since they aren't inflamed and that would be even more trauma to his throat.
The surgery is scheduled for May 6. He will stay one night in the hospital to be monitored for swelling and issues with the filler. Hopefully he will be able to come home early the next day.
The filler only lasts 3-4 months so we will watch him and monitor his health for those few months and see if we think the surgery helped. If his breathing and other issues are greatly improved we will discuss surgery to repair the cleft.
If things do not seem improved over that time then we are back to square one and will have to try to find a new avenue to keep him healthy.
I pray this is the answer we want/need. I am so burned out. I feel so defeated. I feel so alone. I just want to see my little boy healthy and happy for more than a 5 day stretch.
I am still very nervous about the filler since there are many risks that come with it. We didn't do it in March because of the issues, and now we once again don't really have much of a choice. I just pray she has steady hands and that it doesn't do any permanent damage to his vocal cords.
Sunday, April 14, 2013
Colin's Illness
Colin has been sick more than he has been healthy since he was 4 months old. Many times people would think that he just has a slight cold unless you are around him for a good amount of time.
If you spend enough time with him you know that he coughs a lot and that he doesn't have the same amount of energy a 2 year old has. He can keep up with the other kids for awhile but then he has to drop off because he can't breathe.
We have been to doctors and had many tests run on him. Every time we think we have his illnesses under control he pops up with another symptom or issue.
Last week he had the PICC line put in. I thought this was going to really upset him. He has done great. He doesn't pick at it, he doesn't complain about it. He has just accepted it. Just like he has accepted everything else in his little life.
We constantly get comments from doctors, nurses, etc about what a great patient he is. As long as he is allowed to hold my hand they can take his blood, do his vitals, check his ears or lungs or any of the million other things he has had done.
While in the hospital they had to swab his nose, I told the doctor he should do okay. She wasn't so sure. After it was over she repeatedly told him what a great job he did and that most of their teenagers don't do as well as what he did. We went off to find a sticker or something for him.
What all this leads to, is while I'm very proud of my little boy for being so brave and doing so well with all these procedures it is hard on me.
I feel like my 2 year old shouldn't have to know how to get his blood drawn or an IV put in, or laying still for ultrasound or x-ray. I don't want to be told that he did great, I want to be told he doesn't need them.
I have been having a really hard time this week with accepting it all. Maybe I need to take a page from his book and just accept that this is a part of our life and it isn't going away any time soon.
If you spend enough time with him you know that he coughs a lot and that he doesn't have the same amount of energy a 2 year old has. He can keep up with the other kids for awhile but then he has to drop off because he can't breathe.
We have been to doctors and had many tests run on him. Every time we think we have his illnesses under control he pops up with another symptom or issue.
Last week he had the PICC line put in. I thought this was going to really upset him. He has done great. He doesn't pick at it, he doesn't complain about it. He has just accepted it. Just like he has accepted everything else in his little life.
We constantly get comments from doctors, nurses, etc about what a great patient he is. As long as he is allowed to hold my hand they can take his blood, do his vitals, check his ears or lungs or any of the million other things he has had done.
While in the hospital they had to swab his nose, I told the doctor he should do okay. She wasn't so sure. After it was over she repeatedly told him what a great job he did and that most of their teenagers don't do as well as what he did. We went off to find a sticker or something for him.
What all this leads to, is while I'm very proud of my little boy for being so brave and doing so well with all these procedures it is hard on me.
I feel like my 2 year old shouldn't have to know how to get his blood drawn or an IV put in, or laying still for ultrasound or x-ray. I don't want to be told that he did great, I want to be told he doesn't need them.
I have been having a really hard time this week with accepting it all. Maybe I need to take a page from his book and just accept that this is a part of our life and it isn't going away any time soon.
Carnival
On Friday we went out to dinner. While at dinner we noticed that in the mall parking lot they had a carnival going on. After we finished dinner we went over and walked around. Alyssa asked to go on some of the rides and we told her no because it was too cold and I didn't have any cash, but we told her we would go back today.
So today after nap we we back to the carnival. We bought 16 tickets, because we weren't sure how the kids would take to the rides. We started slow with a trip on the carousel. We then went on some super tall slides. From there the kids took off, they rode rides by themselves, they rode rides with Chris or I. They had a blast, we had to buy another 16 tickets so that they could continue their fun.To top the whole thing off at the end we bought a funnel cake and caramel apple.
The kids enjoyed it and we promised next time it was in town we would go back again.
Wednesday, April 10, 2013
Ear infection
While in the hospital I'm pretty sure I came down with the flu. I had more symptoms than Colin but did not say anything because I didn't want to get kicked out of being able to stay with Colin.
I came home feeling better but my left ear started to really hurt.
Yesterday I went to a walk in clinic where they said I had a severe ear infection. I have now had two doses of medicine and while I can smile and eat now without severe pain my ear still feels like it wants to explode off my head from pressure and pain.
I feel so bad when the kids have ear infections because this is miserable.
I came home feeling better but my left ear started to really hurt.
Yesterday I went to a walk in clinic where they said I had a severe ear infection. I have now had two doses of medicine and while I can smile and eat now without severe pain my ear still feels like it wants to explode off my head from pressure and pain.
I feel so bad when the kids have ear infections because this is miserable.
The Last Week
Last Thursday we had an appointment with Colin's pulmonologist to go over blood results and talk about our next step from the bronoscopy.
I was nervous going into the appointment because a lot of the tests we had done were for CF. So we get to the appointment and are called right back. (The nice part of having the first appointment after lunch)
Very soon after we got in the room the doctor walked in the door. This set off a red flag for me, because we never see the doctor first. We always see a resident who talks to us and examines the kids and then the doctor comes in.
So he comes in and first words out of his mouth say when did the excma start? I told him that we had been battling it for about 2 months and I wasn't sure if it was an allergic reaction or eczema. He said it was definitely eczema and that it was an easy fix he would prescribe a new med for us to put on Colin. He wanted Colin to soak in the tub for 20 minutes a day and then put the medicine on him and then vaseline to keep all moisture on his skin.
I then start to talk about the cough. He says well let me examine him, because I think the cough has to do with the findings that we have. That made my heart race. My mind is going to CF or some other horrible illness. So he examines Colin. The whole time Colin is coughing every minute or two.
So we sit down after the exam and he says, so we knew that there was strep A in his lungs but he also had other multiple bacteria in his lungs. All the blood work came back normal so we don't have any immune disorders we are worried about but I want to admit Colin to the hospital for 2-3 days. In that time we will put in a picc line and he will see an infectious disease specialist. I also want to get an ultrasound of his spleen.
We were allowed to go home, pack our bags and we were to head back to the hospital between 6-7 that evening.
So on the way home I am making phone calls left and right to try to get the daycare covered, trying to inform family members of what is going on and so forth.
We get home and I get a bag packed, close up the daycare and eat dinner.
Colin and I get to the hospital about 7 and get checked in down at admin. We were then told to go ahead and go to the 7th floor. So we got up there and were shown to our room.
Thursday night all that happened was intial vitals were done, talked to doctor, IV was put in and meds were started.
On Friday he had an ultrasound done by 8:30 am. He got his picc line placed and later in the afternoon we talked to the infectious disease specialist. She wasn't too concerned with his condition and said she wanted to see another 14 days of oral meds after the 14 days of IV and talked about surgery for his cleft if this doesn't work long term. We also saw his pulmonologist.
Friday afternoon Colin took a late long nap, when he woke up he felt warm and was more lethargic than he had been.
By Saturday morning he was running a fever and was told we would not be going home that day. He was swabbed for RSV, Flu and other viruses. It came back that he had the Influenza A so we were started on Tamiflu.
On Sunday he had to prove that he could/would eat and drink okay and also have wet diapers and we finally got to go home about 5:00.
He has gotten better everyday we have been home and is coughing the least I have seen in over a month. His nose is also starting to clear up. I'm really hoping we have a few weeks of a healthy boy.
We have lots of follow up appointments and at those we will get a game plan for going forward.
I would have never dreamed that I would be giving my son IV antibiotics. But they seem to be helping and I'm so greatful that we do not have to stay in the hospital for 2 weeks for him to receive this medicine.
I was nervous going into the appointment because a lot of the tests we had done were for CF. So we get to the appointment and are called right back. (The nice part of having the first appointment after lunch)
Very soon after we got in the room the doctor walked in the door. This set off a red flag for me, because we never see the doctor first. We always see a resident who talks to us and examines the kids and then the doctor comes in.
So he comes in and first words out of his mouth say when did the excma start? I told him that we had been battling it for about 2 months and I wasn't sure if it was an allergic reaction or eczema. He said it was definitely eczema and that it was an easy fix he would prescribe a new med for us to put on Colin. He wanted Colin to soak in the tub for 20 minutes a day and then put the medicine on him and then vaseline to keep all moisture on his skin.
I then start to talk about the cough. He says well let me examine him, because I think the cough has to do with the findings that we have. That made my heart race. My mind is going to CF or some other horrible illness. So he examines Colin. The whole time Colin is coughing every minute or two.
So we sit down after the exam and he says, so we knew that there was strep A in his lungs but he also had other multiple bacteria in his lungs. All the blood work came back normal so we don't have any immune disorders we are worried about but I want to admit Colin to the hospital for 2-3 days. In that time we will put in a picc line and he will see an infectious disease specialist. I also want to get an ultrasound of his spleen.
We were allowed to go home, pack our bags and we were to head back to the hospital between 6-7 that evening.
So on the way home I am making phone calls left and right to try to get the daycare covered, trying to inform family members of what is going on and so forth.
We get home and I get a bag packed, close up the daycare and eat dinner.
Colin and I get to the hospital about 7 and get checked in down at admin. We were then told to go ahead and go to the 7th floor. So we got up there and were shown to our room.
Thursday night all that happened was intial vitals were done, talked to doctor, IV was put in and meds were started.
On Friday he had an ultrasound done by 8:30 am. He got his picc line placed and later in the afternoon we talked to the infectious disease specialist. She wasn't too concerned with his condition and said she wanted to see another 14 days of oral meds after the 14 days of IV and talked about surgery for his cleft if this doesn't work long term. We also saw his pulmonologist.
Friday afternoon Colin took a late long nap, when he woke up he felt warm and was more lethargic than he had been.
By Saturday morning he was running a fever and was told we would not be going home that day. He was swabbed for RSV, Flu and other viruses. It came back that he had the Influenza A so we were started on Tamiflu.
On Sunday he had to prove that he could/would eat and drink okay and also have wet diapers and we finally got to go home about 5:00.
He has gotten better everyday we have been home and is coughing the least I have seen in over a month. His nose is also starting to clear up. I'm really hoping we have a few weeks of a healthy boy.
We have lots of follow up appointments and at those we will get a game plan for going forward.
I would have never dreamed that I would be giving my son IV antibiotics. But they seem to be helping and I'm so greatful that we do not have to stay in the hospital for 2 weeks for him to receive this medicine.
Tuesday, April 2, 2013
Alyssa and the Dentist
Today Alyssa went to the Dentist for the first time. I wasn't sure how she was going to do. So I took her to someone she has seen almost daily for the last two years. One of my daycare moms works as a dental hygienist.
So we get to her office and she asks Alyssa if she wants to go first or let me go first. Alyssa decided she wanted to go first. So she got up in the chair and the hygienist gave her a pair of sunglasses to wear.
The whole time Alyssa did exactly what the hygienist asked her to do. Even when the dentist came in she did what he asked.
They gave her a good report, no cavities, and very little tartar build up.
It was then my turn and she was allowed to hang out in the waiting room doing puzzles and looking at books. She did great for that as well. She didn't come into the room once and sat quietly.
So good visit and we will go back in 6 months.
So we get to her office and she asks Alyssa if she wants to go first or let me go first. Alyssa decided she wanted to go first. So she got up in the chair and the hygienist gave her a pair of sunglasses to wear.
The whole time Alyssa did exactly what the hygienist asked her to do. Even when the dentist came in she did what he asked.
They gave her a good report, no cavities, and very little tartar build up.
It was then my turn and she was allowed to hang out in the waiting room doing puzzles and looking at books. She did great for that as well. She didn't come into the room once and sat quietly.
So good visit and we will go back in 6 months.
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