Today is January 2, 2005 - Nicholas is the joy of our lives. Coming along in his own way. He is now 3 1/2 years old & has HPE semilobar & partial diabetes inspidus. He is healthy & doing very well. He has therapy sessions several times a week, which is a hugh help. He is having his second botox series January 6th. His last one was 6 1/2 months ago. It lasted that long & we saw remarkable results. He had the injections in his upper hamstrings of his legs. It did wonders with him having less tone & being able to sit longer & more comfortable. He is a peanut but he is maintaining & doing well on his chart for overall growth. He is extremely good natured - a very happy little man. His goreous light blue eyes & his long long lashes are the talk of every conversation. He started school 2 times a week thru the Bellingham special needs system. He is handling it very well & the teachers he has have been great. We are very fortunate that Nicholas has the best doctors. The best in the field & that is a hugh blessing. We also love the support & guidance from the Carter Center, a great source of information. Nancy Clegg has been a true angel in our lives. So caring & helpful. I appreciate her friendship & expertise. I am a full time stay at home mom, I do dedicate all my time to being there for both my children. I think the time & dedication & love & prayer - miracles do happen. I have seen it. To believe & have faith is an amazing thing. I believe in Nicholas. He always amazes me. His strength & determination. He is my HERO. Nicholas teaches me, he has shown me how to truly live life & to value time. He fills my heart & soul. I am so grateful to have him. He uses partial AFO's which he does not like that much. But he manages with them. He wears them 2 hours a day. He also uses a stander to weight bear & help him with standing. He uses that also 1-2 hours aday. He crawls comando crawl. He tries so so hard, his legs go like a little bugger - froggy style. His arms he moves, not as freely as his legs. One arm has alittle more tone making it a little harder for him to truly crawl around. But he inches & gets there. He loves music, especially orchestra music. Or when I sing. He loves tv - his favorite shows are Lazy town - Hey Arnold & Miss Spider & the sunny patch kids. He likes alot of the Nickelodeon shows. He really comprehends & understands alot. Nicholas & I have an amazing & special bond. We can communicate & relate to each other perfectly. He is on a puree low sodium diet. Fresh fruits & fresh vegetables blended. He likes oatmeal & applesauce & yogurt. He likes ice cream & mash potatos. His all time favorite is fruits. Stawberries & banana's especially with oatmeal fruit crisp added with some whip cream. He loves it.. :o) He has two good size portions for meals in addition He also is bottle fed & has 4 bottles aday of pedisure a day.- with his diabetes we add a small amount of water making his bottles 1 1/2 ounces of free water to 6 1/2 ounces of pedisure. That is perfect for maintaining his diabetes. Nicholas does not use medication for his diabetes - the small amount of water we add to his diet works well for him. Nicholas has reflex that he was also born with & that is maintained by prilosec & mylanta 2-x's aday. He has done really well with managing his reflex also :o) Nick does tend to bite his fingers. This is a habit alot of HPE children suffer from. I have found using thick mittens & gloves helps to separate his fingers & keep his hands open more free-er while protecting his skin. It helps, not a true cure, but it has help bigtime. He has learned too on his own,to try to stop himself from biting - he tries to pull his own fingers & hands from his mouth to fight the urge to bite & often he does very well, every now & then with that bite reflex - he will still sometimes bite himself. But he is trying. Doing very well. I am very proud of Nicholas. He is amazing little man. His sleeping has gotten alot better to, we do not use drugs to help him sleep. He has learn to relax with me & he does go to sleep. I will tell him every nite it is time for nite nites & I give him a kiss & cuddle & snuggle with him & he closes his eyes & sucks on his binkie & he goes to sleep. He is a night hawk. He usually goes to sleep about 11:30 & will sleep til 9ish. He mostly he will sleep thru unless his ears are bothering him. Nicholas sstill continues to get ear infections, less often but he still does get them. He has had two sets of tubes done & is getting his third set again very soon. The tubes after a year often fall out on their own. That is what has happen again & with him getting infections - they will again replace them. I am hoping in time as he grows he will outgrow the ear infections themselves as his inner -ears fully develop. Nicholas levels have been awesome. We frequent check his sodium levels (diabetes) & he is doing awesome. We especially keep up with is levels when he is sick with cold or ear infection or any other bout. That is when often the levels will fluctuate. But Nicholas has been doing very well. Thank god. We have our first official dentist appointment in Feb. Looking forward to seeing how that goes. Funny enough Nicholas likes & enjoys having his teeth brushed. We use a training toothbrush & training toothpaste. It is a easy & safe form of toothpaste for children learning how to brush. WOrks well for special needs children that don't realize how to spit. The training toothpaste is a safer toothpaste in case they swallow it. Nicholas loves books, he enjoys being read stories. He likes the telephone & hearing from our loved ones - family & friends who we touch base with regularly. y dad & his Mammy. He enjoys hearing their voices. We are learning & growing together as a family. Nicholas is a gift in our lives. How proud I am of him. How much I adore & love my son. Time is a precious gift. We are enjoying & appreciate each day. Looking forward to alot of happy times & lot's of smiles. That's it for now - Will be in touch soon. God bless & Best wishes to all of you :o)