Saturday, January 1, 2005

January 2005

January 1, 2005 Happy New Year!! We hope you all had a happy and safe New Year's Eve. We look forward to what the new year will bring for J and all of our beloved Family, friends and Jacob Fans! J hasn't had any appointments since the last update, but he has several during the month. The most important is on the 11th. J will be going to Wesley Medical Center for an eye exam under anesthesia. Dr. V. will perform the exam and will determine whether J's left eye needs surgery. If so, he will likely perform the surgery the same day. J also has therapy and ophthalmologist appointments. As always, detailed updates will be given for each!

January 4, 2005 As you read on the home page, the Smith family has lost a very dear member. Bernita "Bunny" Smith, Jacob's great grandmother, passed away yesterday January 3rd. She was 90 years old. Thankfully, Jacob was able to visit his great grandmother on a number of occasions. And although he is too young to remember those visits, the rest of the family will share with him the memories and photos as he gets older.

January 6, 2005 One year ago today, Jacob came home from the hospital. He spent 4 months and 2 days at Wesley Medical Center in the NICU. As I sit at the computer and type, the Fighter is playing in his walker on the kitchen floor. This year has been amazing. I am so proud of my boy!

Many of you have probably heard about the horrible ice storm that hit the Midwest. Wichita and most of Kansas was hit hard. The storm knocked out power to some 45,000 Wichitan's, thankfully we were not one of them. We did lose power for a short time on the 5th and for a few hours today, but not long enough to get too chilly. Today we had a tree service out to remove two large tree limbs that feel on our house. One fell between our neighbor and ours and sat on the neighbor’s power line, luckily it did not break loose. The other, fell against the porch and on top of the house. The damage is minor but the tree trimming was expensive!

Tomorrow morning (the 7th), we will leave for Kansas City to attend the visitation and funeral of Brett's Grandmother Bernita. As you saw on the home page, she just loved her Jacob! She would carry pictures of him with her all the time and show them off to her fellow nursing home residents. He was a celebrity there!

January 14, 2005 - Morning J didn't make it to his exam under anesthesia this week. Due to a continued cough and runny nose, I had to reschedule it. So, no news in that department! Later today, his Physical Therapist will visit with him. Because of the bad weather, holidays and illness all around, he hasn't seen any of his therapists for a few weeks. I will happily report today's visit when it's over.

Also today, J's Grandma Smith will be paying us a visit. She will be in town from Dodge City for an appointment, and will spend the night and spend time with us. We always look forward to her visits (and Grandpa Smith too, but he won't be coming this time) and of course she enjoys the time she gets to play with her grandson.

January 14, 2005 - Evening I guess I spoke too soon. J's therapist called to cancel her appointment today. No worries though, he will meet with her (and others) again soon!

January 21, 2005 It's been a busy week here in Fighter Land. Not only did J have two therapy appointments, but I started back to school! Scary!

J's therapy appointments went well. The first was on Tuesday with his physical therapist. She worked with J on standing and crawling. She encouraged Brett and I to really get to work with him since he's a little behind were she would like him to be.

On Thursday, J worked with his VI (visual impairment) therapist. She told us that for many visually impaired children, wearing no pants and socks often helps when learning to crawl/walk. It gives the child a chance to feel textures with his skin, in this case, carpet and wood floors. She would like us to wean Jacob from the bottle to either a sippy cup or regular plastic cup. As many parents out there know, this will be a hard task. We will work with him gradually and hopefully wean him soon. Getting him to use a sippy cup will be a great step for him and for our pocketbook- the special nipple he uses, called a Haberman, isn't cheap and has to be special ordered from the internet!

Jacob's eye exam under anesthesia will be on the morning of Jan. 25th. Please keep him in your thoughts and prayers. Brett and I have grown rather discouraged of J's vision. We hardly see him react to light, let alone an object in front of his face. No matter the outcome though, we will get through.

January 24, 2005 J will be going in early tomorrow (Tuesday) morning for his eye exam. In the past, the exam has led to surgery-- Dr. V. goes in to perform the exam, then comes out to talk to us about what he saw and if he thinks surgery should be performed at that time, all being done while J is under anesthesia. As always, I will have a full report on the website as soon as I can.

Thank you for your thoughts and prayers. They mean so much to us.

January 25, 2005 Jacob did very well during his exam this morning. He didn't have surgery. He was cranky before and after because he was hungry, but other than that, there were no problems. The results of the exam were as Brett and I expected- not good. We told Dr. V that as of late he hasn't been reacting to anything, not even light (he used to react to lights/ bright colors). He said that that goes along with what he saw during the exam- fluid pooling in both eyes. He asked Brett and me if J's Pediatrician was pleased with his weight gain and growth. I guess nutrition can have an effect on the fluids of the body. I told him I would call the Pediatrician to get her opinion, but I didn't think it was a problem since she was happy with his progress at his last visit.

Dr V said he would talk with J's Pediatric Ophthalmologist, Dr. J, about what to do next and then give us a call. We lost J's contact lens this weekend, so he is going to discuss with him about a new lens and if we should try one in the left eye. Even though we know J's vision is poor, wearing contacts/glasses would be beneficial in stimulating brain activity, which is very important for a growing infant.

We haven't lost all hope for J to have vision, who knows what will happen in the next few years, but we have grown rather discouraged. Thanks for thinking of J and us.

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