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Notes From a Mother's Heart

Wednesday, February 18th, 2009

Just some thoughts on loving JJ... When my son was diagnosed I could have blamed God saying "how could you let my little boy be so severely handicapped?" But after praying about it, and finding out that it was even more severe than we had originally thought, I actually became closer to Him than I've ever been. I love my little boy more than words can even say, and unlike some people might, I love him just the way he is. God has given me the peace to love him this way. When some people hear me say that they ask me "Well don't you wish he was 'normal'? He'll never be able to do so many things!" And my honest thoughts on that are that if it is God's plan to perform a miracle on my son than that would be so awesome, and I'd take it, but until then I am going to do my best to love him the way that God loves him, just the way he is. Because that is how God made him, and God gave me this little Angel for some reason, it is my duty(and honor) to love him how God loves him and every one of us, just the way we are. Anyway, I just wanted to share with you how, being close to God during the hardest times of my life, all of which have been within the past year, has not only brought me through it, but has also made me so very happy and thankful for all that I have.


Tuesday, June 17th, 2008

Wow, I can't believe its been more than a month since I last posted on here. My days have pretty much collided into one another for the past month so it seems to be going at lightning speed. Since my last update JJ has gotten 2 teeth. One on May 17th, and the other today! so now he has 2 on the bottom and 1 on top. May 21st JJ had his first, what I think to be, Infantile spasms, and he had some more the following day, but I haven't seen any lately. You can see video's on the update page. I myself am not doing too hot, I'm feeling majorly stressed, and insecure about how well I am taking care of my angel, and I feel as though I am under a microscope. I am feeling very vulnerable, and probably taking things a little more critical than I should, but I'm sure that all these emotions come and go, and besides I've only had this diagnosis for not quite 2 months. I've been feeling so stressed about every little detail of my life, and I just keep thinking about the saying that "God won't give you more than you can handle" and I just don't know if thats true! I'm feeling at my limit and still things are being added daily. At least JJ is back to being the smiley little guy I know and love. I missed that, he was gone for a couple weeks, I am thinking because of the teething. He's doing well with eating, and we will be going tomorrow afternoon to Bronson for a date with the pediatric surgeon. I have decided that before any kind of surgery takes place I want another swallow study done. I am NOT satisfied with the results of the last one and I just don't understand how they can go off the results of ONE of these tests. In my heart and gut I do not believe that he needs a g tube, at least not right now! He's doing SO well! I'll be sure to update how everything goes tomorrow. We also have an appointment with the Ped Neuro Friday, Yippee doo da day! I'll be sure to let you know how that goes too! Thanks for your continued prayers and support!


Tuesday May 13, 2008

Ok so I know I haven't written here for a couple weeks, and I'm sorry about that, I've got a lot to share. First of all May 7th we found out that JJ does NOT have Miller-Dieker Syndrome(I was happy to hear that). And secondly that day JJ's first tooth popped through! So we now have 1 tooth! And he's working on the second one right now, I can see it trying to come through but it hasn't broken through the skin yet! Now yesterday we went back up to Kalamazoo for more testing(see update page) and basically the only thing we found out so far from that is that JJ will have to be put on a feeding tube. :( We were very saddened to hear this, but it is definitely a nessesity since he is aspirating some of his food. He could get a lung infection or Pneumonia from it and we definitely don't want that! He's getting bigger although he was weighed yesterday and only weighed in at 14 lbs 4 oz but he's up from the 3rd percentile to the 10th! He's currently wearing size 3-6 months and size 2 diapers! We also found out something rather cute, he can't sleep with his socks on! He hates them on when he's trying to sleep! He was SO fussy one night and I thought it was because he was teething so after about an hour of him crying I handed him off to Jason and went into the other room. Within minutes he stopped crying and I came back out and asked "WHAT did you do to get him to stop?". He then told me he just took his socks off. He was snoozing by then as well! Silly boy! Well I hope everyone is having a lovely May, I can't believe its already the 13th! Keep praying for my little man, he needs all the prayers he can get! God bless you all!


Wednesday April 30th, 2008

Well Dr. Driscoll's nurse has been looking into seeing Dr. Dobyns and according to her we will have to wait at least a year to get an appointment! I'm ticked about that, I was hoping he'd be able to see him FAST! He's got a swallow study, Baer hearing test and EEG May 12(NOT looking forward to that, were going to be there all day!) Plus I found out that the blood test we did Monday(the 21st) was to see if he had MDS(Miller-Dieker Syndrome). It should be about 3 weeks(from the date it was taken) till we get it back. I found that out Friday when I took Noah to see dr Driscoll and he told me that he got a letter from the neurologist. Ok well, I keep having sneezing attacks and I've gotta feed JJ! Have a great day!


Wednesday April 23nd, 2008

I'm trying to think of as many questions as I can for the Dr. God knows I have many rght now. What type of Lissencephaly does JJ have and to what degree/grade? I found out that there is a dr in Chicago(dr. William Dobyns) that specializes in Lissencephaly and I think I am going to see if I can get an appointment with him. Another Liss mom told me that she met him twice at the 2 Lissencephaly conferences and that he is the one that gave her more specifics about her son's condition which would be great if he could do the same for us. I just have no clue what I should expect, I don't want to get my hopes up for him to do thinks that aren't possible, but I also DO NOT want to just give up and think that he will never do any of that. We can't be negative and also I do believe that anything is possible with the power of prayer. God can give my son a miracle and I believe that with all the prayers that we are asking for, that he will get his miracle. I just love him so much and want the best life possible for him. He is my precious angel and I will NEVER give up on him. I love you more than anything JJ!! You are now and will always be a sweet blessing to your daddy and me!!! Love you!!!


Tuesday April 22nd, 2008

Yesterday was the hardest day in my 23 year old life. We found out JJ has a rare brain disorder known as Lissencephaly. I'm devastated although I know that in some way God will give us a miracle even if its him surpassing the grim outlook the dr has given him. I just love my littel angel to pieces and as of right now cannot imagine what our life will be like in the coming years and maybe I shouldn't try to imagine that. He's so beautiful and I still look into his pretty blue eyes and see what he could be. I will never stop loving this little boy as long as I live and I truly believe that God has a plan for us. He gave my son this ailment for a reason and I know if we have many people praying for him, he will get his miracle. I will not let this diagnosis bring us down. He'll be a light to any one who meets him. Don't get me wrong I have to hold in tears almost constantly. As parents we just wand the very best for our children and this news is heartbreaking. This is going to be very hard to deal with every single day, and it will be hard to keep positive all day every day, but we will try our best to do just that. Anyway, I'm so exhausted and going to bed!