Seth UPDATE!

Here is an update on Seth if you want to read it!

http://gloriouslywoven.blogspot.com/2010/12/seth-update-and-haircut.html

Seth update and HAIRCUT!

About a month ago Seth got another ear infection and it was a bad one so he had to get on drops and antibiotics. Well of course a week later it went to the other ear. He has not had good luck with his ears and I totally thought that the tubes in the ears would help. His doctor explained to me that it does help a lot especially in the area of pain and drainage. The problem we have is Seth really does not complain about things if he is in pain. He probably had the ear infection well over a week before I took him in because he was still snotty and I could not figure out why.

The week of the November 16th Seth had a few appointments that were pretty important. He had a swallow study done, a urologist appointment, and he also saw a gastro doc.

Swallow Study

So the swallow study was first and of course it really was not the news that I wanted to hear. They gave him a different levels of thickness and watched on the x-ray how he swallows. The barium that they give him shows up black on the screen so it was pretty cool to watch. Anyways so what happens is when he has very thin stuff (like medicine) he does a really good job pushing it back with his tongue cause there is not much work involved but he does not have all the muscle control to move and swallow all at the same time so it actually pools in the back of his throat right where the flap closes off the lungs when you go and swallow so you do not aspirate. Well since it pools right there he tries and swallows and then the flap closes so some splashes into his lungs. Not all of it goes in there so it is not called full penetration but rather a "splash" (This can be the reason he gets so many respiratory infections and also the problem with his ear infections) The thicker foods he was not able to work his tongue very well so it took him a long time to try and get it down his throat but he did a lot better a swallowing it and none went into his lungs. So that was a good thing but the problem we are having is that there is not much we can do in this area, basically we wait and let him develop and in the meantime we have to start thickening his bottle. We have already had one bad time when we know for a fact that he aspirated because he was not breathing and trying to cough and couldn't but finally started to cough and he coughed for about 20 minutes until he threw-up whatever the medicine was and a lot of mucus. That kind of stuff scares me and it is the worst with medicine and that is the most important thing for him right now. The worst medicine we have to give him is his sabril and that is simply because it is 15ml morning and night and it literally takes us 15-20 minutes to give it to him and he at least chokes 2 times.

Urologist

I took him for a 6 week check up after his surgery and they did an ultrasound and then met with us after to check his incision and talk to us about the results. The right side (grade 4) was completely back to normal and completely perfect. The left side (grade 5) was still swollen and not quite back to normal yet and he said this could take a while so we have to keep him on his antibiotics and come back in 3 months for another ultrasound. He said that after a surgery like that he expects swelling and he used an example of if you blow up a balloon and release the air it take a while for the balloon to go back to its original size, he said that is the same thing with Seth's kidney. He also said with how bad it reflux was it might take a while. He said they only grade kidney reflux to a 5 if he could really pick what Seth's was he said it would have been a 12. I asked if there was any kidney damage and he said none on the right side but the left side could have quite a bit of scaring but everything should be fine.

Gastro

We had a gastro appt the following day and we got thickening gel for his bottles so that he does not aspirate into his lungs and also they mentioned a feeding tube which I really do not want. I have been trying really hard to avoid that and since he is taking in some solids I am praying we can hold off in that area. He will go back in two months and then we will discuss the feeding tube again depending on his weight and what he is actually getting calorie wise. The doc has us increasing his formula and pediasure intake to 8 ounces every feeding to try and get him up to 1000 calories a day but it is really hard to force him to eat that many ounces a feeding. He normally can take 7 but sometimes he goes as little as 4 so it is a tough thing to do. 

We also were able to go and get his AFO's which can be a pain to put on. He is suppose to wear them all the time except for sleeping. I have been slacking in the area of working him up to all day but we are getting there and he seems to not mind them at all.

He also got a hair cut finally and let me just tell you it is so adorable!

Random Pictures...

Back on September 2 it was Michael's birthday and we took him to his favorite place...Joe's Crab Shack. If anyone knows me they know that I HATE fish of any kind and pretty much anything from the sea. But I can handle this place because they have chicken that I will eat :) Here are a few pictures of our fun night!

Sydney got a lemonade that they give with pop rocks and you put them in your drink, she thought it was the best thing ever!

Michael being a goof with the monk-monk and of course his bib.

 She actually looks very innocent here....so not the case :)

She thought it was so funny to hear them pop

Way too excited!

Michael with his entire pot of food!

 The cutest little muffin in the world!

Oh his "Hippo" teeth as we call them :) He is so precious I can't stand it!

Sydney Turns 4!

On November 12, 2006 my precious little girl was born and now she is 4 years old! I can not believe that I have a 4 year old. She can make me laugh, cry, want to pull my hair out, scream, and kiss her all at once. She something else but man do we love her with everything we have!

On her birthday I took Seth to my moms around 11 so that I could just have some one on one time with my birthday girl. We headed out to the Phoenix Children's Museum where daddy met up with us when he was done with all of his work appointments. She loved the place. She has been there one time before but she was only 2 so this time she actually could do things and had a great time. Her favorite part was the grocery store and the kitchen. She was able to walk around and put groceries into her cart and then check out and pay for them and she also got to make us food. She also got to play with the race cars, make us fake ice-cream cones, run through the noodle forest, and play with some sand art table thing :) She would have stayed all day long if we did have to go get a late lunch. She had so much fun and I think I really need to take her back when it is not a Friday because there were at least 3 different schools there doing field trips.

We then let her pick where she wanted to eat lunch and of course she wanted to go to the WONDERFUL Red Robin! I love that place and as so does she. She loves the freckled lemonade and especially the strawberries inside and of course she gets a balloon when we eat there so thats enough for her :)

We then headed over to build a bear and let her build her own something and we also had a 10 dollar off coupon so it worked out pretty good and she didnt want any clothes so that was even better :) She picked out the girl reindeer and the heart lights up when you press the foot. Mike and I recorded our voice and stuck it in there as well :)

Then off to get her some cotton candy and man was she in heaven. She loves this stuff but yet will never eat it all. Maybe 6 bites and then she is done but it was so funny watching her eat it all by herself. We have only gotten her cotton candy from Disneyland and I HAVE to eat majority of it so I normally just pull pieces off for her but this time she got the whole thing to her self.

I would have to say that she had a great birthday! I have some other pictures from my camera not my phone that for some reason were not uploaded in the computer of her opening her birthday gifts. She got some books, a movie, and of course the white walking dog that she has wanted for her birthday for the past 2 months. We let her open all her gifts and when she had nothing else she was so sad that she did not have the one thing she wanted...then out came daddy with the LAST gift and she could not contain herself she was so excited. I wish I would have gotten it on video she was so cute. 

Sydney Nevaeh Marinello

November 12, 2006 @ 5:59pm

4 crazy years later!

Halloween & Baby Connery

First I am going to start with Halloween. Sydney had her school Halloween party the Friday before Halloween and this was actually the ONLY day she went to school the whole month of Oct. We had a crazy month. Seth had surgery Oct 4th so that week she did not make it to school. The following week she got the stomach flu and then the following week she got a strep rash so we kept her home for one day which was Tuesday so Thursday I go and take her to school and my car battery is DEAD so once again no school for her cause I could not get anywhere. So anyways she went for the last day of the month and then we decided that we are going to wait until we move and find a school close by that will hopefully not interrupt with Seth's therapy. She wanted to be a unicorn for Halloween this year and I tried everything to get her to change it but can I just say that my daughter is incredibly stubborn. Here are a few pictures from her school party:

On Sunday Halloween we were suppose to go over to the MacCallums and have some Halloween fun like we did last year but Seth decided he would wake up with a cold and it was pretty nasty and I did not want to get Lisa sick or the kids sick so close to when baby Connery was due. So we just stayed home and went trick or treating in the neighborhood and let me just say our neighborhood was DEAD. Here are a few pictures before we headed out and she was only out for 30 minutes and was ready to come home. She kept telling us that her basket was full even though it barely had candy in it. I tried to get her to stay out longer but she really wanted to come home so that is exactly what we did. 

So Lisa finally had her BABY! I got to be there which was an amazing experience and of course Connery is a gorgeous baby GIRL! Connery Mae MacCallum was born on November 2nd at 4:38pm and she weighed 8 pounds 6 ounces. She has the most adorable head of hair!

For some reason I did not get the scale at the right amount I am not sure what happened.

What a doll!

Love the hair!

Thanks so much for Lisa for having me there and what a beautiful perfect little girl she is!

Oh Goodness!

Okay so I am a little behind. My next few posts are going to be catch up.

-Halloween
-Baby Connery MacCallum
-Seth and his leg braces
-Sydney Turns 4
-Double ear infections for Seth
-37 week appointment for me
-Seth and his swallow study
-Seth and his GI appointment

There is a lot and I will start on it this morning :)

Service Dog.

After Seth's surgery he started having a lot of seizures and a ton more spasms. We have been working with the neurologist and changing up his meds to figure out something that will work. Last Monday we got into Dr. Bernes and we decided to put him on the Vigabatrin (Sabril). We spent the next two days filling out the paper work and faxing it back to his office so that we could get the meds shipped to our house. Thursday S.H.A.R.E (Support, Help And Resources for Epilepsy) called us and verified some information and then told us we should have it Friday by 4:30pm. We got it pretty early on Friday and it came with a lot of information especially how to make it every day. For the first 5 days he gets 5ml-the second week he gets 10ml-and the third week he gets 15ml. We just started giving him 10 ml and if you know Seth at all he is not a fan of taking anything other than his bottle so getting 10ml down him takes about 15 minutes. I can not imagine what it is going to take to get him to swallow 15ml. That should be fun! We have noticed some changes. There are days when he has as little as 2 spasms and then there are days when we notice 10 or more. As soon as he no longer have any we are to call Dr Bernes and keep seth on the dose that stopped them. We will do it for 6 months and then take him off. If he never stops having the spasms then after 3 months we HAVE to take him off of it according to (SHARE)

So after all of his seizures I spent a lot of time online looking a seizure alarm that would beep if he started having one. The problem I was having was A. they are really expensive and insurance is hard to get it covered and B. The person using the alarm needs to be at least 56 pounds. Seth has been 21 pounds since he was 9 months old and if he continues on this pattern it will take him a really LONG time to get to 56 pounds. Sydney is a big girl and she is just now 40 pounds so I am thinking it will be a while before he gets to that weight. Then I heard about the service dogs. They have dogs for people who just need help in everyday life, Guide dogs, dogs for the deaf, Autism dogs, and seizure alert dogs. So I really started looking into this. A lot of sites will not give dogs until you are a certain age. (for example to get an autism dog you need to be at least 4 and for a service dog you need to be 18 and for a guide dog at least 14) and each site has slightly different ages for each of their dogs. Well I finally found a site that does not have an age limit on it. They believe that the younger the better. Now it also is really expensive to get a service dog. I am talking about 22,000-26,000 dollars depending on which company. The company I found is 22,000 dollars but they only require you to raise 13,000 of it and they cover the rest. So today I printed out the application and I will send it in and start thinking of ways to raise this kind of money so that we can get him a dog that could help us in so many ways and also a dog that will be his and his best companion. 

This week and next we have quite a few appointments. Seth has to have a swallow study and a sweat test done, along with getting his feet/legs casted for braces, meeting with his gastro because last week at his 15month check up he went from the 50% to the 10% in weight so we will be talking about his nutrition and feeding tubes which is something that I do NOT want, also an ultrasound and follow up appointment from his surgery to make sure that everything healed okay and that the kidney reflux is resolved. 

If you have any fund raising ideas please comment and let me know cause I am totally new in this area!