Saturday, June 26, 2010

You won't believe what he said !!!!

I just have to share because I am so excited and proud. Just a few minutes ago Wysdom amazed us. He said "I Love You". I say this to him all the time in the hopes that he would pick it up. Luckily, Julian and I were both there so we know that we both heard it. And if we weren't blown away and overjoyed enough...he said it again. Wow, we are so blessed. He sure knows how to melt a mamma's heart.(not like it wasn't melted already though).

Friday, June 25, 2010

Updates Part 1 of 3: Blended Diet and New Teeth

Sorry for not posting that often. Things are crazy. Life is such a journey and we seem to be on a couple of waves right now and just hanging on.( Wysdom is good though, it's more family things) Things in the family are pretty busy. My sister is pregnant and due to have a baby any day now, my father ill and my grandmother needs help to. So any spare time is spent pretty quickly. As well I have a different sleeping pattern due to Wysdom. I have kind of lost my wild hours of staying up all night. Yeah for me, I get some sleep... but not so good for the blogging time. 1-3am was my prime time to blog....

I have so many updates to tell you about that I will do it in parts. This week alone we had around 5 appointments and the next two weeks are the same. We went to physio, the ENT, had a hearing test and saw and infant development specialist to name the big ones. However I think the best update is that things are going really well on the blended diet. Wysdom has been on a blended diet for about a month right now. No formula for a month and it has been amazing. We make his own food at home in our Vitamix.I can barely describe the differences because they are so huge. Wysdom is now more than likely eating better than all of us in the entire house. Albeit it is through the tube...but it is better than his Nutren formula. On a given day he is eating things like hemp seeds, flax oil, squash, broccoli, kale, chicken or beef. He has also had molasses, quinoa and many other new foods. He seems to be tolerating everything very well. He rarely is constipated and has maybe thrown up 2 times since we started. Our ND says he looks amazing and is so much more alert and active. Let me tell you active he is...

The difference is so dramatic. He now has lots of hair, can be thrown up and can go on a swing. He seriously has never been on a swing for the first year and a half of his life. With no reflux now he is loving it. He is eating really well and our next step is to see if we can lower the volume of his food and do one entire feed orally.
Yes sometimes the blended food is green, brown, orange or purplish...but he still eats some of it by mouth with some baby cereal and the rest goes in the tube.

In the midst of all of this Wysdom is getting a lot of new teeth, three-five possibly. For sure three that we can see. He is fussing a bit here and there but nothing that doesn't calm down with a little homeopathic's, baby signing time, and occasional Tylenol. We are so thrilled that he is getting teeth.....however his are all different shapes. I honestly don't mind that they are not looking like conventional teeth. The problem is that the two front teeth are really sharp and more like daggers. He cuts his poor little tongue and now likes to keep his tongue up on the roof of his mouth. We are scheduled to go to the dentist at the end of the summer. That is the first appointment for this specialist. The one thing that they did mention is that children with heart conditions need antibiotics when they get dental work. Has anyone heard of this? We are going to be checking with our cardi. So it is great that they are coming in, but oh boy when he gets a hold of you it feels like a knife. I will have to see if I can catch a picture.

So that is the first part of the update. Next to come is info on our ENT and Hearing Test this week and our physio program. For now that's all the time I have. I have to go make some dinner.

Oh yes and on a personal note I am trying a raw food diet for myself this week. So far I am on day 3 of about 85% or more of raw food.I am (slowly working my way) through a raw food course via the Internet. I have plans to start a new foodie blog...right now it's empty though. I will keep you posted. Have a great weekend everyone

Monday, June 21, 2010

The Joy of the Blended Diet.

It has been several weeks and the Blenderized diet seems to really be working for Wysdom. I totally don't want to talk about it too much and jinx it, but I want to also share what we are doing and the changes we have seen, just in case any of you out there are interested. In the last couple of weeks since we have switched from formula to real food we have seen DRAMATIC CHANGES and I mean DRAMATIC. Let me just say Wysdom has been on a swing for the first time in the last couple of weeks. That should give you an indication as to how bad his reflux has been in the past. Right now on the blended real food diet he has not thrown up much. Maybe about once or twice. No more mucus or suctioning from the nose or saline sprays. He is now sleeping mostly in his crib, where prior to he was unable to be in there for more than a few minutes. One of the greatest things was to see his dry skin dissapear and his hair grow like crazy in the last couple of weeks. We not only have the absecne of the reflux and constipation, but we have the bonus of him looking healthy. Wysdom is totally more energized and wanting to interact more. He want and is trying to learn more signs daily and showing us new things all the time. We believe this is a testiment to the blenderized diet and the fact that he must have been feeling not so hot before.

Wysdom is probably (actually he is) eating better than anyone in the family. On an average day we put things like a protein powder, kale, broccoli, blueberries, hemp seeds, quinoa, flax oil, fish oil, peas into our Vitamix Blender. You can see he is eating pretty good. The great news is that right now he is holding his own in the weight department and is at the 50th percentile. He did gain last week, so we were very happy. Right now we plan on continuing on the real food diet and hope to progress in the area of oral eating and drinking.

This week we are headed for a busy schedule and I am sure I will have lots of updates. We have a hearing test, and ENT appointment, physio and several other respite appointments. I will keep you posted.

Monday, June 7, 2010

He's into everything!!

Wysdom is feeling pretty good I think. He is really getting into everything and causing lots of trouble(just kidding). He is in love with his g tube right now and there seems to be no way to hide it from him. I usually yell "Wysdom" when he is playing with the tube or trying to put it in his mouth and I have learned that he likes this reaction because he gets attention. So he is doing it all the time. I swear yesterday he did it about 10 times in a row. Several times successfully opening the tube and the contents all over his chair. I must hold the record for the amount of laundry I do.

Wysdom seems to really trying to communicate. He has always been a huge babbler and likes to make lots of noises and hold a conversation of babbling back and forth. He now is saying mama, dad, Dada, hi, maybe high chair and the start of big boy. He is also singing drink, more, up, and eat. He also understands where his toes are and wiggles them on demand. However I think his all time favorite is to open his own diaper when I ask him if he wants a bath. No, sorry his all time favorite is to PEE on me when I change his diaper and then laugh. Close second is dancing in his chair with Blyss while she performs to the Dancing Wii game. (Who knew that New Kid's on the Block would make a come back)

Although Wysdom is keeping me extra busy, I can't not lie. I love it!!! I love his new found energy. Just love it!!!

Thursday, June 3, 2010

There is always drama

I have learned that there can always be some drama when you are trying to advocate for your child and there is someone on the other end who wants to deny you services. Last couple of weeks we have been dealing with some major reflux and sleep apnea. Do you think we could get a sleep study referral. I will not recount all that we went through because I honestly don't have the energy to go back to the anger that I felt. It can be so draining.

Wysdom always has had some apnea in my opinion. For sure he has had reflux and horrible reflux at times that entails throwing up and gagging more than 5 plus times a day. We have never really counted the full amount...on those days it is just to crazy(I am afraid to know the real number, it could be double digits on some days). So a couple of weeks ago(before we started the blenderized diet)Wysdom had another crazy bout where we have to put him on pedialyte. So after this I was bent on getting some further appointments. I know enough from all of you mom's out there that apnea and reflux can lead to permanent damage to the lungs and heart. So I thought I could call up our doctor and as for a referral. I could never have been more wrong.

Long story short, after fighting, arguing and calling around and doing some detective work so to speak. We got in for some preliminary appointments. Wysdom was seen last week and had a neck xray to rule out and obstruction and a referral to our ENT for a sleep study. As well as an EKG to rule out any damage to the heart from the apnea. The crazy thing is this and it's crazy. By the time we had gone through all the drama and argued for days to get an appointment, we had already found our own partial solution. To remove formula from his diet!!!! So NOW we have a very different child on our hands. He is sleeping better and refluxing less. So now we have many appointments for the future to deal with but for now we are rejoicing that the apnea and reflux have calmed down enough that I can go to bed before 3 am and that he can sleep in a bed a little and not just in a bouncy chair.

So in realty it is that the drama has pushed us to take things into our own hands and not depend solely on others for our son's well being. It is the drama that caused us to move to a Blenderized diet of real food that we feed Wysdom via the g tube. It is the drama that has lead us to some real answers. So as much as I hate the drama. .it helped us this time.

His x ray and urine sample came back good. Next we go to the ENT at the end of the month and go from there!!!