What kids Say

Well, I feel my week has been boring. Audrey didn't have school due to parent-teacher conferences. She is doing so well in school. I'm so proud of the progress she is making. She is a natural born leader. But I must say she does have a way with words. The other night she was helping me with the laundry. She had gotten a new teddy bear that day and wanted to share her new name. She named the bear, Isabella Humdrum. Pretty creative for a 5 yr old. She thought her name was so wonderful that we should have given Nate the same name. I explained to her that Isabella Humdrum was more suited for a girl and that mom and dad were proud of the names they picked for their kids. She asked how we picked her name. Besides the fact that Audrey is a pretty name, I explained that her name was inspired my moms favorite actress Audrey Hepburn. Audrey said to me "Who? Audrey Hotworm?" I was rolling on the floor with laughter. Kids are so cute, aren't they? Maybe it was more funny in the moment but I had to share. In the mean time, we're just waiting for some warmer weather. When is it going to come?

Nate's Growth Charts

Nate's Growth Charts They show each check-up by dots. These were at 1 month, 2 months, 4 months, 6 months, 9 months and 12 months

LP Bowling Event

Nathan, Audrey and I attended our 2nd Little People (LP) event. We traveled to Farmington, MI (9mile & Middlebelt) to participate in the LP Bowling event. I was happy that we went even though the small group of people that we knew didn't come. Especially when they said they were going. Anyway, we had a good time and got to meet a new family and mingle with some other people. I'm not the best at meeting new people and flying solo with the kids is bit more of a challenge. Nonetheless, we did meet a great family. Liz and Mike have 4 wonderful children. The two oldest girls are twins and they were very helpful with teaching Audrey to bowl and watching Nathan. Thank-you girls. Their third child is a 2yr old girl with Achondroplasia. She was a cutey and it was nice to talk to Liz about our kids milestones and what it's been like to raise a child with dwarfism. She also has a 5 month old son. So in between all the talking Audrey and I got to bowl. Now, this was Audrey's first time bowling and I thought mom was going to teach her a thing or two. Wrong, I lost to my 5 yr old daughter. Mom got a measly 83 while Audrey whooped my butt with a 104. In that 104 she got two spares, that means she actually knocked all the pins down. Something mom couldn't do and there was bumper rails. I guess I'll have to work on my game. Don't worry, there will be a rematch and I'll fill you in on the details. Oh, and to note, I remember all the gear I had to take for Nate and Audrey but forgot the camera. Sorry no pics :(

Nate's First

Nathan had his 1st Birthday on Jan. 4, 2009. There was a wonderful celebration at the end of the month. Audrey's birthday is Jan. 28th and it more convenient for everyone to gather once. He has said his first true word "HOT" but knows several others. He is really beginning to blossom. It is such a joy to see him develop.

Nathan also got to have his 1st Haircut in February. It was hard to do it since he has beautiful curly hair. He didn't like it either, he cried the whole time. They gave him a balloon which helped to calm him down.

The Ear Infections

Nathan was 6 months old when he got his first ear infection. I hadn't realized he even had one. The doctor discovered it at his 6 month well check. We were given an antibiotic that didn't work and he had to go onto another one. But that cleared everything up. I started to be more careful at propping him up more when he ate and putting in swimmers ear plugs into his ears at bath time. I really felt that this was working until we entered fall and winter. By November (10 months) Nate had gotten another ear infection. We treated this with antibiotics and it also cleared up. I started to think that we may be headed for tubes in the ears. I tried my best to keep water out of his ears but by now, he was actively teething (6 teeth at once). I feel that this and the cold he contracted in late February led us to our 3rd ear infection. This time the antibiotic that worked had become resistant and we had to once again try another antibiotic. The new one almost cleared everything up. Nate still has fluid on his ears and was given an antibiotic shot as well as another antibiotic to help finish clearing it up. We had our first ENT visit on Thursday and given a steroid to clear up some inflammation. If it works we may not need the tubes but I feel it may be better to get them. We'll see, our check-up is the end of April.

The First Few Months

After two days in the hospital, I got to bring my new baby home. He was great right from the start. Both my kids were good sleepers and I got 6 hours of sleep. But that didn't last long. Nathan was jaundice and had to be feed every two hours to help clear out the bilirubin. I felt so bad because he had to get poked for blood draws to check his levels. But we got it to come down without going under the UV blanket. Next we were scheduled to meet with a geneticist about Nathan's condition. To tell you the truth, I was still hoping the doctors would say that he didn't have dwarfism. The did a full exam on Matt's family history, my family history and checked Nathan from head to toe. The outcome was achondroplasia drawfism. We were asked if we wanted a genetic blood test done on him to confirm. It was still early for him. He was only two weeks old and our insurance didn't have him on record yet. We opted out and felt that the test could be done at any time. So we continued with the doctor checkups and Nate and I got our routine down. I was due back to work and at 5 weeks, I left him in care of my in-laws for a couple of days a week.

Nate did fine until 4 months. He started to develop a rash on his face. I couldn't figure out what it was and nothing seemed to help it. We visited the doctor and was told it was eczema. Okay, but what was causing it. I asked for allergy testing but was told he was too young. At this point I was told it was due to the weather and to protect his skin from the wind. By 6 months it had gotten really bad. He was so itchy that he would scratch until he bleed. I had to trim his nails real short and put socks over his hands when he slept. At our next doctors visited he was given and antibiotic cream to prevent infection and a steroid to reduce the inflammation. Thankfully, this combination worked. I switched the Burt's Bees lotion I was using to Eucherin. That's what the doctor suggested. Also at this time, even through I was breastfeeding, I had tried Nathan on some formula. I wanted to see if this would hold him a little longer between feedings. He got real irritable and after some hours threw up. I decided to stick with breastfeeding.

Nate was 6 months old when he had his MRI scan of his head and neck. He needed to be checked to insure proper fluid flow through the cervical junction in the skull. I really wished I was told that I would be at the hospital for 4 hours. I thought and hour tops and was not prepared with distraction. I worried a lot. But Nate did fine and the test results were better than expected. I was also excited because the six month mark is when you can start solid foods and I was looking forward to start reducing breastfeeding. He loved all food except a custard dessert that I feed him. This too got him real irritable and after 4 hours he threw it up. I thought about this and what had happened 2 months earlier and it dawned on me. Nathan had a milk allergy. That's why he threw up the custard and the formula. It took much deeper thing to realize that the eczema was an allergic reaction. The lotion I was using on his face had buttermilk in it. I used it for so long thinking that that wasn't it because it was a natural lotion and that couldn't cause skin problems. Of course, if the doctor would have listened and the allergy testing done, we would have know so much sooner. I tried Nate with some soy formula and he tolerated it well.

From the beginning

Nathan was due to arrive on January 14, 2008. My pregnancy, which was my second, was going really well. I didn't feel exhausted, I craved healthy food like salads and milk, and since I was carrying weight from my first pregnancy was happy to hear I wasn't gaining to much. My check-ups were great and I couldn't wait till my ultrasound to see what I was having. My husband (Matt) and my daughter (Audrey) came with me to find out. Now Matt and I were sure that we were having another girl. We waited for the tech to finish all the important stuff and were thrilled when she said it was a BOY!! One girl, one boy-PERFECT. Matt took Audrey to the bathroom and I leaned over to the tech and asked "Are you absolutely positive it's a boy? We're not going to be surprised when a girl is born are we?" She said "I wouldn't tell you if I wasn't positive. I've been doing this for 14 years." Now I had to ask because I thought I was only going to have girls, but I secretly knew it was a boy since all I wanted was a blue bedroom. The tech printed up ultrasound pictures and gave them to us. Once in the car, I looked at those images and at the time thought she didn't take as nice pictures as when I was pregnant with Audrey. Now as I look back, I believe those really were the first signs of dwarfism.

Everything progressed well until my 36th week. Although I measured fine in the belly, I had only gained 9lbs. throughout the pregnancy and the doctor ordered another ultrasound to get the baby's weight. The tech performed the ultrasound and then I was asked to wait for the doctor. Of course, I thought they were going to tell me his weight or that I was going to have the baby early or something. What came next was like a scene in a movie. You know where they zoom in on someone mouth as they are talking and it's slowed down and real deep. I don't remember much of what was said. The doctor started with the long bones were measuring short and then it seemed to go into statistical formulas and numbers. I remember sitting there and thinking after I heard the word short, "Does this mean he's a dwarf?" The doctor never said that nor did she seem to know what to say about the situation. Of course, I didn't either, everything fell on deaf ears and I knew that they had to do another ultrasound. I took Audrey by the hand (she was with me through it all) and left the office and got in the car. I probably shouldn't have been driving but I didn't want Audrey to think something was wrong. I cried the whole 20 minutes it took to get home.

I immediately ran to my computer and started my research. I had to ask the question, What does it mean if a baby's bone are measuring short? My conclusion was what had popped into my head as soon as the doctor said "short bones"-dwarfism. I must of spent hours on the computer hitting one link after another, reading the medical jargon and wondering what his life was going to be. I understood quite a bit since I have a medical background, which may have been a downfall. Now I had to take all I found out and inform Matt what the doctor said and what the meant down the road. He took the day off so we could see the specialist for my second ultrasound. I was hoping that Nate was not in a good spot on the first ultrasound and the second would confirm everything was okay. But the results came back the same as the first. Although they got that information right, Nate was not the 9lbs they said he was going to be. I was scheduled for a c-section after actively arguing that I needed to have him now.

My c-section was scheduled for 9 A.M. on Jan. 4, 2008. I pushed for Dec. 31, 2007 but they wouldn't do it. I guess you have to be 38 1/2 weeks. Nathan Edward Wolf was born at 9:04 A.M on Jan. 4, 2008. He weighed 7lbs 9oz and was 20 1/2 inches long. He passed his app gar's with 9's and was healthy and beautiful. His was examined by several doctors and taken to the NICU to await x-rays. I was taken to a room to recover and waited for my son. I thought an hour or two but it really took 5 hours for me to see him again. The nurse rolled him into the room, I finally got to hold him. I stared at his face and I held his hand and I knew that Nathan had achondroplasia dwarfism. I didn't need a doctor to tell me or the x-rays to show it or even an explanation why it happened. All I needed was to know the best way to care for my son. What needed to be done medically to insure his life?

Background

Hi, My name is Laura Wolf. I'm a first time blogger. I know many have shared their stories and I feel it is important to share mine. My son, Nathan, was born with achondroplasia dwarfism. Although I am not new to the challenges of raising a child with special needs, I'm new to the feelings of being a mom raising a child with special needs. I grew up with a sister who had Cerebral Palsy. I remember some of the challenges that our family faced but I never had to worry.