7/13/10 My little one hasn't been feeling well lately so I haven't been on here a whole lot. He is doing better now & I am trying to get caught up again. He had his first visit at the Shriner's hospital yesterday. Overall it went well, he was fitted for ankle braces & hand splints. The doctor wants me to consider hip surgery for him. There are risks that scare me but I am seriously considering it. The surgery itself will take 4 hours & there could be lots of bleeding & the possibility of blood transfusions. Plus being under anesthesia that long could cause more pulmonary issues for him. He would have to be in a body cast for at least 6 weeks. I think the long term benefits would be great for him if all goes well, this decision hard though because he has had so many surgeries & been through so much already. So, while doing research, I am praying God will guide me to make the right decision!************************************************************************************** 5/9/10 Happy Mother's Day to all the Moms!!! A week ago today I got my son an 8 week old puppy...it's like they were meant to be together! She loves laying beside him & he loves her as well! If she is not at his side & he coughs or cries she rushes to him to check on him! It's hard to believe she is as young as she is & so good with him! (I think she is an "old sole"). We named her Jewel because she is so awesome with him! I haven't let her sleep with him at night yet because I am afraid of her chewing his tubes, etc he is hooked up to, but in the morning she has lots of kisses for him & excited to see him! I think they will be best friends! I will post pics of them together! Again, thanks to all for the prayers, it means so much when going through difficult times & my prayers go out to everyone of you on here!! **************************************************************************************************4/27/10 Thanks for all the votes! Sorry if I missed anyone on voting, had computer issues. I think I have it straightened up now & will get caught up tomorrow.****Had a very long day...left at 8:15 am & got home at 7 pm from doctor appointments for my son. He now has 16 diagnosis!!! He will be doing a sleep study & gonna get an EKG of his heart & he is at risk for Pulmonary Hypertension! He will also be starting oxygen at home again as his oxygen levels were too low. So many things for a child to go through!! I found a place that helps brain damaged kids & does amazing things for them & I think my son would be a great candidate. I'm looking into the financial aspects of it all but would LOVE to get him into this program (& I will somehow find a way!!). Very intense therapy, but if it helps him I am up for it! This is one of the best places & even if I have to call them 5 times a day everyday begging & pleading I will do it to get help for him! I want the best for him & will do everything I can for him! I sometimes take on more than I should at one time, but I am a very determined person & I fight for what I believe in & I definitely believe in my children!*********************************************************************************************4/22/10....Took my son to pediatric eye doctor & he was diagnosed with CVI--Cortical Visual Impairment. He has atrophy...there is damage but it's hard to say how much. We are going to try vision therapy & see if that helps & go back in 6 months. This condition can change from day to day so there may be hope that he has some vision & may have to wear glasses all the time, but I will take that! I was so thankful that there is hope for him!!! I pray he is able to see...he LOVES racecars & there are so many other things I want him to see & do, despite his disabilities. Thanks for the prayers for my son & for everyone voting! I am trying to make sure I vote for everyone & return all votes. Hope I'm not missing anyone!!************************************************************************************************4/21/10 Sorry, I haven't been on much lately....Thanks to all who have voted for me when I couldn't be here! Things have gotten very hectic. I take my youngest to the eye doctor tomorrow (thanks to a friend I met). The place that transports for medical appointments cannot take us because they have people off & it was short notice. The eye doctor thinks it's important to get him in ASAP (as do I). I have been noticing changes in him & I have always known his vision wasn't good, but was told he was able to see. I have noticed he seems to be relying more on his hearing & he does not startle or blink when I put my hand close to his face & does not follow my finger if I move it from side to side. I will find out in the morning if my fears are confirmed.*********Yesterday I got a letter from courts in Ohio that my son's father wants visitation! I called the courts & explained that I am out of state & have no vehicle. All they would say is that they will have the hearing whether I am there or not & it's in my best interest to be there...or visitation would probably be granted! The hearing is scheduled for next month & I have no clue how to get there!! My son's father has not seen him since he was 4 months old & knows nothing about him or how to care for him! To put it nicely, he is NOT a good person. I fear for my son's safety & life if I am forced to send him with his father. Legal Aid won't even represent me because my ex has no attorney for himself listed (that just seems downright CRAZY)! I cannot afford to pay for an attorney on my own & would feel so much better having one there with me. All I want to do is make sure my son is protected & safe!!! I would do anything for my children & I honestly don't believe it would be in my son's best interest to have his father in his life, for MANY reasons, as bad as that may sound. Any suggestions and/or prayers are very welcome!********************************************************************************************************************************************* 3/29/10 The courts have finally caught up with my son's father for non payment of child support & I got a notice in mail today that they want me in court as well that day for the hearing. The court date is set in June, I just have no way to get there...it's 4 1 /2 hours away in Ohio! I'm hoping & praying that something comes along & I will have a vehicle before that! Going to Ohio that day would also give us a chance to see my 2 older sons (ages 20 & 15)...WE MISS THEM SOOOOO MUCH!!********I just have to say, I am totally amazed at responses my son gets from complete strangers. Some have brought tears to my eyes because they say the sweetest things: "God has great plans for him", or "He is one of God's children & God loves him very much & you are blessed", or simply saying how adorable he is! Then there are others who stare at him in disgust & only see imperfections. I have to remind myself that some people are just ignorant! My son keeps me going everyday & I wouldn't trade him for the world....he is perfect to me! Sometimes as I look at that sweet smile I realize we ALL have imperfections but my son, & others like him, have something that some adults seem to lose along life's trail....he has the ability to love without condition!!!! **************************************************************************************************************************************************** 3/24/10....My son had fevers & seizures today & everything is under control at the moment. My sis (only person besides doctors I know here) informed me that she will be going on mandatory day shift & won't be able to help with rides to doctors, etc as much. Most of the specialists are 2 hours away & there is transportation for medical appointments that we use. However they stop running at a certain time & if appt. is in afternoon (we have to take whatever is available) we wouldn't get back til after closing time, not sure how this is gonna work out yet! Right now getting a vehicle would help my son & I out greatly! If possible I would also need any assistance with tax, tag & title for a vehicle! **************************************************************************************************************************** I was employed until my youngest son was born... he was 3 months premature (weighed in at 2 pounds 6 ounces). The doctors told me the best thing I could do was take him off life support!!! (What a thing to tell a parent! Obviously I could not do that!) He was in NICU for 9 1/2 weeks & has numerous difficulties. He had his first surgery at 3 weeks old. In his first year of life, he had spent 9 months in & out of hospitals (mostly in). During this time, he had 15 surgeries. My son has 12 doctors & therapies to help with his medical conditions. Due to all the appointments, care, etc he needs, I am not only mom, but nurse as well. I get paid with lots of hugs & kisses! (but this doesn't work when trying to get a vehicle lol). The engine blew up in the vehicle I had (it was 17 years old) & I have not been able to attain a different one as of yet. I need a vehicle to get my son to doctor appointments, therapies, get prescriptions/supplies, etc. Due to being a single mother, "making it" has been a challenge but by the grace of God, we have been surviving. My son is now 3 years old & 32 pounds...he has grown a lot! Some of the medical issues he has includes, cerebral palsy, seizure disorder, hydrocephalous (with a shunt in his head), bronchio pulmonary dysplasia, & has a G tube (feeding tube). He has a wheelchair...he cannot walk or crawl or even sit up on his own. He is unable to talk, but has found ways of voicing his opinions & likes/dislikes. Depite all this, he is a very happy boy & a true gift from God. Being a single parent of a disabled child has not been easy by far & I'm sure there will be many obstacles ahead...but if I had it to do all over again, I would make the same choice & save his life! This child has showed me what faith truly is & he is a miracle!