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MOM OF ALYSSA, EMILY AND JOSHUA
nicumom |
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BUSY WEEK
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Jun 26, 2010 09:18am (EST)
First week off for the summer and some many things done on the to do list. Most of the to do list involved Joshua's medical/therapy needs. First Step evaluation done. He still qualifies for services in all 3 areas...OT, PT and speech. This Monday we all get together and make his goals for the next several months. It is hard to believe that we are on a count down with First Step. I am already so sad to think they will not be part of our family come January 23.
The surgeon thought Joshua looked great and put a button back in the hole on Monday. For three weeks Joshua was sporting a tube everywhere now we can attach a tube to the button during feeds so he can play without a tube in his way.
My poor guy has been feeling under the weather all week. He has been extra crabby and very sleepy. I took him to urgent care on Thursday and the Dr. said both ears were red so we started some antibiotics. I am concerned that he has now developed a fever even though he has been on antibiotics for 2 days. His respiratory rate has increased. I am keeping a close eye on him. I hope we don't end up in the ER but if he continues to breath hard that might be where we need to go.
Right now he is cuddle in my lap resting. Pray he gets to feeling better. Thanks!
BTW...The girls are loving summer. We are swimming everyday. Emily is learning how to cook and sew. Alyssa has taken it upon herself to tutor Emily so she will be ready for school in the fall so she is busy lesson planning. Yesterday Alyssa taught Emily how to estimate lenght in inches and then measure. It was so cute!
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Posted by nicumom | Comments: (2) | Permalink
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G-TUBE
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Jun 01, 2010 01:10pm (EST)
After a great weekend we ended with long nightmare visit to the ER. Joshua's g-tube clogged at home. After taking it out and cleaning it we could not replace it back into the hole. Both Mike and I could get it half was in and then it was hitting something. We picked him up and took him straight to the ER. The ER was helping right away but after three different DRs trying they put in a folley cath and called for surgery to come assess the situation. Six hours later Mike and I found ourselves holding Joshua down as the surgeon tried a procedure called dilation in the ER. I thought it should be called something else. He took long metal rods and forced them down the hole trying to make the hole big enough for the g-tube to slide back down. It maked me sick to even think about how bad it must have hurt and how scared Joshua was.
The surgeon put the g-tube in but after an X-ray we found out it was sitting on top of the stomach not in the stomach. A more expereinced surgeon then cam to assess the situation and decided to admit Joshua and do surgery to replace the g-tube and to check for any damage that might have been done by the dialtion procedure. 14 hours after getting the g-tube out Joshua went into surgery. The Dr. said that a pocket had formed on the outside of the stomach but no damage was found. He had the recreate a hole in the stomach for the g-tube becuase the one that was there could not longer be reached. (well that is what I think he said...I had no sleep at this point)
Joshua woke up from surgery great and is now catching up on all the rest he missed last night. He will be able to start eating in the morning and hopefully be discharged in the afternoon on Wed.
Ignore type O's please
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Posted by nicumom | Comments: (4) | Permalink
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NEW VIDEO
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May 08, 2010 01:55pm (EST)
I made a new vidoe in honor of Joshua. I hope his story can give hope to others. He has fought hard and given his family such great joy. We know how very, very lucky we are because most babies born in Joshua's condition do not come home. I will never forget how far we have come.
http://www.youtube.com/watch?v=iT9mzdXHtxU&feature=channel
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Posted by nicumom | Comments: (3) | Permalink
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LOOKING FOR ANSWERS
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Apr 27, 2010 06:11pm (EST)
Tomorrow Joshua is seeing a new Dr. in the morning. We are hoping to get some more information about why Joshua is not swallowing. Our hope is that she will do a scope to rule out any physical obstruction. If we don't get any real answers tomorrow we are going to try to get him into the Cinni. Feeding Clinic.
In hopes to improve Joshua's interest in food we took him off formula and are now feeding him a Blended Diet. I am taking the "easy" way and blending mixes of baby food, whole milk, rice cereals and other calorie boosting foods. It has been fun trying something new for Joshua. He is taking about 10 to 20 cc 4 to 5 times a day from a bottle and the rest we are putting thru the g-tube. I am hoping he will tolerate this new food better then Pedisure and he will want to eat more. This is day 4 and we are starting to notice some small improvements...a few times we have been able to cut the feeding times down, we have noticed a little less gagging and the best results so far is he is asking for food much more. He is always signing for a bottle. 
Well I hope to have some good news to report tomorrow.
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Posted by nicumom | Comments: (0) | Permalink
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WHY CAN'T HE EAT???
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Apr 15, 2010 07:30pm (EST)
Our little fighter is moving. He is getting so fast. His balance is AWEFUL but he just keeps going. His poor forehead is always black and blue. It never seems to fail that he always falls head first.
We have cut his oxygen from 1/4 of a liter to an 1/8 of a liter at night. He had his first sleep study last week. I have not heard back about the results yet. Most of the time he stats 97 to 98%. It won't be long and the O2 may be just around for bad moments.
His language is exploding. He is signing and verbalizing so much. It is just amazing how much he is learning all of a sudden. Last week he had over 16 words on his list from his therapy session and I know he has several more words that are not on the list.
The battle over eating issues wages on with no end in sight. Even his therapist are becoming discouraged. He is swallowing less and less. It is so sad. He now ask for food and wants to eat but can't swallow. He will put all kinds of things in his mouth, chew and then spits them all out. He has even pointed to his g-tube to tell me he wants feed through it. We want so badly for Joshua to be able to eat. He has met so many milestones that I never dreamed were going to be possible. I pray that we can just help him with this most basic skill of life...eating.
Mother in Law update. Seh is battling breast cancer like a champ. I am so proud of her. She is doing so well. I really hope that she beats this and in 2 months it will all be over.
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Posted by nicumom | Comments: (1) | Permalink
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SCARED
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Feb 25, 2010 07:48pm (EST)
I am not sure where to start. This really is not about Joshua just life at the moment. When I was put in the hospital 2 years ago to await the birth of Joshua my mother in law was homeless. We had asked her many times to move in with us but she had never wanted to interfer with our life. Well, with me in the hospital I insisted that she move in until she got back on her feet. Fast forward two years later and there are times I want to throw her out on her bum but I think everyone would have those moments. Mike and I really would love to have our privacy back.
But we just found out she has breat cancer. I am still in shock, numb, scared...ready to cry. Here we are just healing from the trauma of Joshua. When I say healing you all know that our normal life is way out side the comfort zone of most normal situations. How am I suppose to handle this? I feel overwhelmed. I just got my feet back under me and the rug is being ripped out agian. I know this is going to be her fight and I can't even begin to imagine how scared she is but Mike and I are going to be the ones taking care of her. I hope I am just over reacting and this is not going to be that bad but she is a horrible smoker, never takes care of herself. It has to be bad. The hospital did the mamogram, ultrasound and biopsy all on Monday it looked so bad. She got the results back today and is scheduled with the surgeon tomorrow.
Wow I am really scared.
I just had to get that out there.
I guess I could give the latest Joshua update. He went to the ped. today. He is in the 10th%tile on height but has lost some wieght so he is on the growth chart at the moment. He was 22lb 13 oz. He never sits still. I guess we have to get more calories in am just not sure when.
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Posted by nicumom | Comments: (4) | Permalink
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I AM STILL AROUND
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Feb 09, 2010 04:32pm (EST)
I feel like all I have time for is reading everyone's blogs. I rarely have time to even comment. Really this is a wonderful development. Joshua is into everything!!! He never stips moving and if he is stopped I have to worry about what he is taking apart.
Joshua started braving walking across the room the day after his 2nd birhtday and our house is not the same. When he was crawling he was atleast not falling. Joshua has to be the most unsteady child ever. He prefers to walk everywhere but he falls into everything on his way. I am consistantly chasing after him to catch him before he adds to his collection of bruises. I know that with a little more body mass he will also develop strenght to keep his balance better.
He is signing more and please all upon demand. He is even using more to tell us things. He loves saying Momma, Momma. When he gets on a kick he says it over and over. He is so very sweet.
We are still in the battle of swallowing. I think this is a losing month. I am trying not to be discouraged. I keep telling myself surely he won't be in 2nd grade feeding himself through his g-tube. I really hope he won't.
I am happy to report that he actually had a bowel movement all on his own. I started giving him MiraLax yesterday and it worked today. Maybe if he can start going he will starting wanting to eat.
He is stating better then ever. We are only giving him O2 support about 14 hours a day!!!
Well, enough about Joshua. Emily has another staph infection. She broke out on her leg last week. I didn't even think about it being staph again until I noticed the same spots on her eye over the weekend. I totally freaked out. She is responding really well to the antibotics. I am hoping that one round will get her all better.
I need to post more often.
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Posted by nicumom | Comments: (2) | Permalink
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CHRISTMAS
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Dec 28, 2009 02:20pm (EST)
Our appoinment with the pulmonalogist went very well last week. Joshua walked from the hospital Nana works in all the way to the pulmonalogist office using his new walker. He was smiling the whole way.
Everyone in the office was so excited to see him walking. They even let him take his walker behind the counter to check everything out.
Dr. Eid took all the credit for Joshua being able to walk. He even told me that I was very lucky to have he and Dr. Morton as Joshua's pulmonalogist. Nothing like having a healthy ego. Mike and I do agree that Joshua has made tons of great progress because of the medical treatment that Joshua has received from them. After all we have been through I really wish that we had been referred to their office as part of our discharge from the NICU.
Christmas was wonderful. We took Joshua to all the family events this year. So everyone on both sides of our family have now got to meet out miracle man. It felt good to finally show our baby boy off.
The girls had a wonderful time playing with all the great things Santa left. It has been an amazing Christmas. We have loved being together and healthy.
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Posted by nicumom | Comments: (2) | Permalink
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