The Rest of the First Year

Christmas Day, we woke up ready for our first Christmas as a family. S was decked out in his puppy dog romper, my mom came over and D cooked a wonderful dinner. S was tired and worn out before dinner so I put him down. He was only 2 months old and there had been much commotion. My very pregnant sister and her 4 year old had come over and S was just worn out. During dinner he started to scream. I jumped up and went to him. He was burning up. I called my sister to help me undress him, change him and take his temp. 103.6. Our first Christmas would be spent in the same place as the first Thanksgiving … in the hospital emergency room. Ear infections and bronchitis. More antibiotics and this time some breathing treatments to ensure that there was no furthering of the lung issues.


I chose to go back to school, against my family’s wishes but I really thought getting out would help. I took 2 classes, an evening meteorology class and a day time humanities 2. I struggled with both, there were days that to get to class I had to stop 5 or 6 times on the way. My mom had decided meteorology sounded fun and took it with me. Having her to read me the text and drive me to and from class probably were the only thing that got me through it.

By February, my symptoms were not getting better. The doctor referred me to a neurologist. I went and saw her, she took a complete history.

She asked about symptoms, family situation, history .. and then told me that she felt there was nothing wrong, but she would run the tests to make sure.

She said that I needed attention, and evidently, this was the only way I knew how to go about it. I asked her what made her say that. She said “Because you have every symptom I asked you about, you even had pain on your face when I pressed on the cheeks.” (years later, I’d finally get referred to ENT to evaluate for sinus surgery. He said that it was a chronic sinus infection …probably there from my pre teen days …gee, and it’s amazing I had pain on my face?)



She ordered the tests, only to find out that since I was on Medicaid, they did not cover outpatient testing. So she told me to go home and be a parent.

In late March, swallowing became nearly impossible. I choked and choked. I wound up severely dehydrated and my primary doc admitted me for fluids. He called the neuro and said I was ill and in the hospital. Come do the tests. She came in, annoyed that she’d been called back in but agreeing to do the testing.

She did an EMG, blood work, EEG, CT scan, MRI … and full evoked potentials and then dismissed me. The nurses were confused because a test involving an IV had been ordered, but not done.

She informed me that all the tests were 100% normal and that there was absolutely nothing wrong with me, just as she’d suspected. She slammed my chart shut and walked toward the door. As she reached for the door knob, I said “if stress and depression is making my body feel like this, behave like this, should I see a psychiatrist”

Her response still rings in my ears

“No, you need to stop being a baby about being a new mother.”

I went back to my primary care doctor, scared, worried, worn out and weak. The thing was … I wanted her to be right! I wanted it to be all in my head. I did not want something seriously wrong with me! I didn’t even want something moderately severe with me!

My primary doc got the letter from her saying that she’d ran all those tests and they’d been normal. He did state that most specialists doing this amount of tests give him more than just their eval, but copies too, but a few specialists only give their interpretations. Because of that, he’d like me to see someone else. I refused. I just needed to grin and bear it.

Maybe I was trying too hard to get attention. Maybe having a sick child was making me crazy?

In April, S got pneumonia bad enough to be hospitalized again. It started with a typical URI .. then the fever went out of control. Found in the doctor’s office, quickly responded to antibiotics, but 2 days after the last dose, we found ourselves at 5 am in the ER with a baby who had 105 fever. It would not be the last time we saw 105.

They gave IV antibiotics and sent us home. As had happened before, an infection was making its rounds around pediatrics and they felt he’d be better off at home. We took him home and around 10 am, he was sitting, rather joyfully, in his walker. He rolled over and SQUEALED with glee. He’d been chewing on a white cloth diaper. I looked and that diaper was covered in blood. Before I could react, I realized I was seeing the very tip of a tooth. *whew!* why didn’t anyone tell me that gums bleed when that tooth breaks through! I might not have noticed had he not been chewing on white. I might not have panicked like I did, had we not spent the night in the ER.

2 days after his antibiotics were done, his fever was high again. Another call to the doctor who said there was only 2 kids in pediatrics, and neither had anything contagious, we were going to admit him for long term IV antibiotics. This time, he had pneumonia, again. We stayed for 8 days … I only sort of remember it.

The day after he got out of the hospital, I was at school and participated in a student health survey. They did several tests including blood sugar. Mine was elevated, they called it diabetes, but I found out later that it was in the pre diabetes range.

I went on a diabetic diet, and felt better. My primary care doctor and I both thought maybe the weakness and fatigue had been a blood sugar issue.

S was dedicated at church with 17 other babies. 2 of them, friends of ours. After church that day we went for a Barbecue with some of the other families who’d participated in the dedication. All was fine, and we stayed late into the evening. The babies had all fallen asleep in play pens in various rooms in the house. We were playing a game of some sorts when S started to cry. I went to check on him and he was burning up. My friend helped me to take his temperature, trying to comfort him. He had 104 fever so back to the ER we went. Ear infection. Again.

In early May S was sent to a Pulmonologist for his frequent lung infections and asthma. At Children’s Medical Center they did not have a full time pulmonologist. He came to town 2 times a month to do clinics. We went to the appointment only to find out that the doctor had been in a car accident on his way in and would not be coming. They had us see the developmental pediatrician just to get the process started.

Based on his medical history, they’d planned on doing some lab work to test for immune issues. When the pediatrician examined S to find that he was not only not developmentally delayed, but way ahead of schedule, he cancelled the lab work. He told me that all children with immune deficiencies are behind on milestones.

He was very concerned that my 7 month old son was not babbling or making any sounds other than laughter and crying. He ordered hearing tests for him, but we’d have to wait until after m y brothers wedding June 2. We’d be out of town for the wedding for 2 weeks. The tests were scheduled for the day after our return.

As an interpreter for the deaf, I was alarmed, scared … worried. He was also concerned because he had a condition known as "Meatal Stenosis” where the urethra is too small, his was almost blocked. He wanted to do surgery. He called the primary doctor before we left who said that with all S had been through, he’d prefer to wait. Frustrated, and in strong disagreement, he told me to talk to the family doctor and make my own decision. Let him know and he’d make the referral to have that taken care of. When I talked with the primary doctor he said that about ½ actually need surgery. It is a condition that CAN be outgrown, usually by age 4, but the surgery was invasive. For a girl, they go in and do 4 or 5 surgeries. A boy, they do 1 …but there is the requirement of placing a stent into the penis for 5 minutes a day 4 times a day. I opted to wait and see.

We got to California and stayed a couple of days with my cousin. S kept up with her kids, the younger one was a year older than him. But he crawled right after them and they had a ball. While we were in the Bay Area, he had 4 teeth come in. He never acted like he was teething, they just were not there one day and there the next.

We arrived in Central California to my Dad’s house and called my husband who was visiting HIS brother in Montana. I put the phone to S’s ear, tearing up because it was a reminder that we were facing possible hearing loss. Suddenly S’s face brightened up and he said clear as a bell “DADDY!”

Well, alrighty then! No hearing loss, just a refusal to make sounds till he could make sense of those sounds. By the time we left California he could say Daddy, gampa, gamma, dog, coke, bean (green beans), pool, and cow. He also, at 8 months old started to walk while we were there. He took his first steps on Father’s Day and was walking before we left 3 days later.

I got back into town and called the developmental pediatrician and told him. He said that was odd, but he wanted to hear him speak before he cancelled the test. We didn’t need an appt, he’d just come out to the waiting room between appts for other children and hear. We did, he did and he shook his head and cancelled the test. He had no explanation of how or why he’d been silent till then. (we would later learn this is a bedrock of his behavior .. do not do something till you can do it RIGHT the first time.)

We were back in town for 10 days when S woke with another 105 fever. Back to the doctor and into the hospital. Breathing treatments for the pneumonia, and more tests to see if the reflux was causing the problem. This stay was only 5 days, but was 5 days too long.

The family doctor again sent him to CMC to the pulmonologist. We arrived and the doctor was there this time. They did chest x-rays and lab work before the doctor saw him. When the doctor came into the examining room to see this 8 month old child walking. He immediately apologized for the lab work, saying if he’d realized he was so far ahead on his milestones, that he’d not have ordered the tests. His lungs were less than clear, and he ordered a breathing treatment. When he came back in, he was moderately happy with the results, but would have liked them to have been better. He sent us home with 3 inhalers and a spacer to use to administer the inhalers.

His diagnosis was “Reactive Airway Disease” but he did not feel it was allergic asthma, but rather weakened lungs. He had no answer as to why this child who’d had way too many ear infections and pneumonia’s could actually walk 4 months early.

A few weeks later, on a Sunday afternoon, the phone rang. It was the developmental pediatrician. He had some news for us and an apology for not having tested him when he first saw him. Samuel had a condition called “Hypogammagobulinemia” It is an IgG subclass 2 deficiency. It is a syndrome that comes with a cluster of symptoms and usually developmental issues. The primary problem aside from developmental was bacterial respiratory infections. He was immediately started on a low dose, daily antibiotic. The pediatrician said that he needed infusions of IVIG .. Intravenous Gamma Globulin. They would start on the paper work. Because he was on Medicaid, it would need pre approval and recommendation of 3 doctors.

The primary care doctor signed off on it, as did the developmental pediatrician, but the pulmonologist wanted to wait. We wound up going back and forth with any 2 of his doctors at any given time being for it, but the others not. When we finally did get 3 doctors to approve it, there was a recall and he never did receive it.

When August hit, I went back to school. The heat of the summer was getting to me and the weakness was back in full strength. The family doctor had retested me four different times never able to repeat the high blood sugar. He decided that it was a fluke and I did not have diabetes or pre diabetes.

As I went back to school, it was during this time that my eating disorder returned with a vengeance. I’d managed to put it on hold while pregnant, and was just too sick to pay attention to it after. I ate when I could … there was something about not being able to eat that made me more willing to eat. I guess it’s my typical rebellious nature bucking at the lack of choice.

I returned to the diet pills and laxatives of my pre pregnancy state, and while I could not exercise like I had, I still did do some. Whatever I could.
In early September, I woke up one morning throwing up. I could not stop and when D took me to the doctor he was alarmed. I don’t remember why, but he put me in the hospital. I missed a whole week of classes.


In October we celebrated S’s first birthday. Many people at his party and his refusal to eat cake instead demanding Geen Beans made it a memorable experience. We put him to bed that night and as I kissed him, I realized he was too warm. He wasn’t acting ill, so I just put him to bed, but in the back of my mind I was going “oh boy! Not again!”

The next morning we got up and called the doctor. He was admitted, again, from the doctors office to the hospital. Another case of pneumonia. While he was in the nurses tried to convince the IV nurse that his foot was not appropriate for this child. She kept insisting that 1 year olds can’t walk that well and will not walk on a foot with an IV in it. (She’d been unable to access his arm) After he’d walked out 3 IV’s, the doctor finally ordered one to be placed in his head. This looked awful, rather frightening, but it was an easy access and he got tangled up in the tubing less than he had even in the arm!

A nurse walked into his room to give him his breathing treatment. He stood up and placed his hands on his hips and in a very clear voice said “Don’t you do that!” To which, we busted up laughing.

During this time my health was getting worse and worse. I’d been unable to chew again and was torn between making my desperate need to loose weight and my inability to chew.

The class after the Thanksgiving break, I went to walk to my classroom. I stopped for the third time to rest and was unable to stand up, my legs simply would not work. There I was, a 25 year old woman and I couldn’t even move my legs enough to change positions much less stand up and walk. Terrified, I sat there for 3 hours, trying every few minutes to move. When I’d finally gained enough strength to walk, having missed my class, I left. I started the procedure to drop classes the next day. I was just 2 weeks form finals and it was too late to officially drop. I had to have instructors approval. My General Physical Science professor would not hear of it, insisting I take an Incomplete. I was unable to finish the work the following spring and it has been on my transcript as an IF.