Sunday, October 30, 2011

Love beyond words...

Wow I can't believe this is my 200th post! So much has happened since I started this blog and I am honored that so many people have fallen in love with our little miracle!

Jacob is such a blessing and has been through more in his short life than many go through in a lifetime. Jake is the strongest boy I know and I am so proud of him for everything he has overcome and for the amazing boy that he is. One day I hope to share this blog with Jacob and show him just how much he has overcome and how many wonderful people followed his story and rooted for him! Thank you for allowing me to share his story with each of you. Tonight I want to vent a little for my own sanity about this next hurdle in Jacob's Journey.

As a parent you always worry about your child. As a parent of a child with a life threatening disease this is of course multiplied. But it is not just the major things that worry me. Lately I have been so worried about Jacob's development. Not because I am afraid he will be delayed because that doesn't matter to me. No matter what obstacle we face I know that we will be stronger for it and I will love Jacob with all of my soul regardless. I worry because I see how frustrated he is getting with not being able to communicate with me and that breaks my heart.

Jacob says some words but it is more like baby jabber than really talking. He does say "Mama, Dada, yeah and things like that but he just jabbers them. It is not like he looks at me and is calling my name. He is progressing slowly and recently has started saying a lot more sounds. For instance when Aidan takes a toy from him he puts his hands out and says "Ma" "Ma" really short and fast but we know that he is saying "Mine". I can't imagine how hard it is for him to talk when it takes so much effort just to breathe. The fact that he can jabber at all is a miracle. Still as a mother I desperately want to give him a way to communicate. The more time that goes by without him talking the more I fear how hard it will be for him to begin to talk.

We have tried to point to pictures but he is not interested in that. The one thing that he seems to love is Baby Signing Times DVDs. My mother in law gave them to us when we had Aidan and they were a huge success with him. He loved them and would watch them non-stop. I recommend them to all parents! I started them with Jacob a few months back and the past few weeks he has really grown to love them. If they are not turned on then he brings me the DVD case and hands it to me. If I don't put it in fast enough he starts to throw the remote at me lol. So he does seem to understand what he wants and is starting to tell me things in his own way. If he doesn't want something he shakes his head back and forth very fast or pushes it away. Most of the time while screaming. Jake also loves to imitate you. Because of this we think that he does understand us. He will interact with me and with his toys etc.

The problem I have seen lately is his frustration is growing. He gets irritated over the littlest thing and throws himself on the floor, throws his head back and does a inch worm crawl on his back while screaming. I have place my arm on his chest or touch his face and tell him it is ok. Rubbing his feet seems to soothe him as well. It is happening more and more and I feel so helpless. I also really want to make sure that he recognises the objects we are playing with. I have started placing objects on a try and then asking him to point to the ball or point to the car. So far he just plays with the one he wants and doesn't really respond to my request. His therapist did point out that up until now we haven't really "Asked" much of Jake with things like that so it may take time but it doesn't mean he doesn't understand. He may just not want to give us the car etc. He does give me a kiss if I point to my cheek and say Kiss Kiss. He leans in and gives me a big open mouth slober kiss on the cheek lol. He is also really great at building with blocks. He loves to build towers out of blocks and when he uses them all and his tower is standing he claps and it sounds like he is saying Yay. Tonight Jake did do the sign for "More" and the the sign for "Signing". That was a huge break through for us. Before he would watch the dvds and move his hands around but tonight it was obvious he was wanting more signing times.

This life has taught me so much about taking the little or big things for granted. I know Jacob is still young and most likely he will catch up and be able to talk. I also always knew that because of the lower oxygen levels he may have delays. His therapists have told me that his motor skills are very good and boys tend to focus on those before their talking. Girls are the opposite. I know he will talk when he is ready if he can and if not, we will find our way. This is just one more path along Jacob's Journey and one more lesson in patience for both him and I. It is so frustrating to see him get so angry and so frustrated but I know that together we will find a way to communicate and we will be stronger for it.

Thank you for letting me vent and get my worries out here. Tomorrow the boys are having their pictures done then we are going to spend the evening carving pumpkins and just enjoying time as a family.Then Monday is Halloween. The boys are trick or treating dressed as Woody and buzz from Toy Story. I let Aidan pick the theme. He is so excited. Happy Halloween everyone!

Aidan and Jake at the duck pond...

Jake was not a fan of the ducks.

Mommy & Me

Hanging out in our new Toy Story PJs!


Wednesday, October 19, 2011

We have a date for surgery...

I can't believe another month has flown by. Some people have been asking when I would be posting again. Like I have said in the past, if it is a while before I post please don't worry. No news is good news :)

But now I do actually have some news...

(Jake doesn't want to hear it)

I talked to CHOP yesterday and we have a date for Jacob's airway reconstruction surgery. It is set for April 25th, 2012. Originally they mentioned doing it in January but the thought of Jacob being in a hospital on the ventilator during the peak of flu season didn't thrill me or Jacob's doctors. Then we discussed March 28th however then we would most likely miss Aidan's 5th birthday. We already missed one birthday because of hospitalizations so we really didn't want him to have another birthday without his Mommy. Mommy didn't want to miss it either :)

So we settled on April 25th. Jacob has a cardiologist appointment on November 15th (almost 2 years to the day we learned our unborn son would be born with HLHS). I am going to talk to Dr. Heydarian and see if we can schedule a cardiac echo some point between now and his surgery to make sure that his heart function is not going down due to his breathing. As long as his heart stays the same then we can wait until spring.

The nurse mentioned that they book the OR for the whole day for this one surgery. It is the only surgery done that day for ENT. This worried me thinking about how major this surgery is on top of everything else he has gone through. However Bert from Dr. Heydarian's office mentioned to me today that instead of thinking of how serious it is. Take it as a blessing that the doctors will have pleanty of time to focus on Jake and not be tired or rushing through it.

I am still praying they will be able to cut the scar tissue by going through his mouth but am preparing myself for the complete airway reconstruction. That way I won't be taken off guard. Still the thought of it makes my stomach turn.

I am looking forward to Jacob being able to run around and breathe without struggling. Now when he is active he can't catch his breath. Still he has more energy than any of us lol. I can't imagine what it will be like when he has a whole airway to breathe through.

As for the post last month about leaving our "bubble" and putting Aidan in pre-school. Well we are back in. We tried it but it was not working out. Jake and Aidan were both sick the whole month he was in. Aidan had such bad anxiety he would non-stop worry about having to go to school even on the weekends. He kept asking when he would be sick again so he wouldn't have to go. My car broke down one morning and he jumped for joy because he knew he wouldn't have to go to school. If it were just for the fact that he would scream and cry when I dropped him off I would have stuck to it but there were so many things. He cried every night, on weekends, was acting out. That plus the kids both being sick and we just were not ready. If Jake was getting every cold that went by now then he would most likely also get RSV or FLU and that scares me to death.

So new plan. For now I will continue to teach Aidan at home. He loves doing his workbooks and learning. Jake will have his airway surgery this spring. I will feel much better about Aidan being in school once Jake has a full airway and is not so high risk. Aidan is ahead of the game as far as development. He knows so much for a 4 year old. I mainly wanted him to be in school for social reasons. I am thinking we may try and enroll him in sports in the spring. Something to get him to interact more with other kids. We are also going to be doing more play dates with friends. I know the transition to Kindergarten will be harder but I know in my heart that this was the right choice for our family.

Jake is still not talking much. I asked his speech therapist to start coming twice a month instead of once. We are working on object recognition with him. Sitting him in a chair and putting objects on the tray and asking him to hand them to us, pick up the block etc. We are also still doing the baby signing times videos. He loves them! He even brings me the DVD case during the day so I put it on for him. We are hoping he will start talking once he has his surgery. He works so hard just to breathe that talking would be very hard on him. He is making a lot more sounds though. His favorite thing to say is "Yeah, Yeah, Yeah Ma'ma". He has a lot of baby babble but as far as words he isn't saying much. We are getting there though! Vowel sounds are the first step and he says all of them. He will talk when he is ready but for now I am focusing on signing and trying to give him other ways of communicating (Other than screaming lol).

Jake's motor skills are great. He is practically running now. He thinks its hilarious to hide in my room and close the door then laughs when I open it up and find him. He doesn't even mind if it is dark in there. I open the door and he is all smiles. His favorite thing to play with right now is blocks. He loves to build them into a tower then smiles and claps when he is done. He says yay. He is so proud, and so are we. He plays with trucks and trains, typical boy.

We are getting ready for Halloween. Aidan is going to be Woody from Toy Story so Jake is going to be Buzz. Jake's costume is just a pair of Buzz Pajamas but I think that will be more comfortable for him. I will post pictures after we trick or treat :)

Until then... Happy Halloween!