GI Appointment

Not much to report; this appointment was very uneventful and almost a waste of time. We did a lot of waiting just to be told that there's not much more the Dr. can do at this point. J's gaining weight, although at the very bottom of the growth chart, he is following his own curve; his stools are normal and regular; and his reflux, for the most part, is pretty controlled with medicine and usually only rears its ugly head when he's sick. He rarely throws up just out of the blue, but nonetheless he'll continue to get Prevacid once a day.

One good thing is that we were given the OK to make the complete switch from Pediasure to Carnation Instant Breakfast. Other than that the nutritionist said to just continue on with what we're doing.

So, we go back in 4 months for a follow up. I wonder if that point we can start weaning him completely from the Prevacid, transition to whole milk and get discharged. I'm keeping my fingers crossed.

Medical Update

After having another seizure early last month I am now officially diagnosed with epilepsy. Initially I took it pretty hard, but after talking to the neurologist I realized that all it really means is that I've had more than two seizures. My Dr. actually wasn't that concerned when we called to tell her about it since all of my tests (MRI, CAT scan and blood work) came back normal. Since I had missed several doses of my medication the seizure was more than likely the result of a drop in my levels. Which means that I now have to take an anti-seizure medication for the rest of my life. But other than that, and being on a 6 month seizure precaution (i.e. no driving, no standing on ladders, drinking in moderation) from the date of my last episode, I can lead a pretty normal life.

Even though my neurologist wasn't concerned, after the last seizure I figured it was time to find a primary care doctor and get a physical. At the initial appointment my blood pressure was very elevated (150/100) so the Dr. discussed switching my current BP medication. Now I really think I have white coat syndrome, so after discussing this with him, along with agreeing to change my diet, start an exercise routine, and check my BP at home 2x daily, he agreed to have me come back 2 weeks later and check my BP before starting any new medication. Long story short, those modifications worked, and I no longer require any blood pressure medication, YAY! All of my other test results came back great as well.

Dermatology Appointment

Justin saw the dermatologist today and initially, just like Dr. Hirsch, was a little stumped with the "rash" on J's butt so he took a sample and will have it tested. But he felt it could be one of two things, either an early stage of ringworm or the more likely case is an eczema patch; so he wrote a prescription for Desonide cream and told us to use it 2x daily.

Update on J

This actually wasn't a routine check up for J. Since Nathan had his 6 month appointment we asked Dr. Hirsch to take a look at J since we had a few concerns about his skin. She wasn't worried about the rash on his stomach and back. It's likely a heat rash so she told us to use Cortizone to help clear that up. But she didn't know what to make of the spot on his butt so she referred us to a dermatologist. I dont even really know what to call it since it's not really a rash; it's round, dark, hard and scaly. Hopefully it's nothing too serious and we get some answers at the appointment on the 16th.

J weighs 21 lbs 2 ozs, only 1 lb 4 ozs heavier than his little brother.

Medical Updates

Yesterday was a busy day for Justin as he had an eye appointment in the morning and then a GI appointment in the afternoon.

J's eye doctor was very happy with his progress and said that the improvement since his last appointment 6 months ago was much better. He mentioned that he may be developing a slight case of near sightedness but there's no need for glasses at this point. So he'll see him again in 6 months to continue to follow his progress.

J's GI doctor was also happy with his progress. He's gained a few lbs since his last appointment (YAY) but Carl didn't ask what his weight was (BOO). Since he's making progress the doctor wants him to continue with the Prevacid 2x daily. But Carl didn't mention to her that we started weaning him down to once a day after his last appointment since he'd been doing so well with no vomiting episodes and no gagging. Things had been going pretty well up until the last few weeks when he started having daily vomiting incidents. BUT, I really think it was a combination of him not feeling too well and the weather. It's been so hot and he gets himself so worked up and unfortunately he isn't doing too well with his juice/water intake.

So overall it was a good day with great news. He has an appointment next Friday with Dr. Hirsch so I'll make sure Carl gets his weight then.

No news is good news

It's been a month since my MRI and the doctor said that I would only hear from her if there was an abnormality so my results must be normal. It would be nice to know what caused the seizures but at this point I doubt we'll ever find out. So now the focus shifts to preventing any future seizures. Which means I have to continue taking the anti-seizure meds for 2 years. If I remain seizure I can discontinue the meds at that time, so lets all keep our fingers crossed. Now I'm counting down the days until I can drive again. I'm definitely not liking being totally dependent on others to get around.

Repeat MRI

I don't really remember much from the last one but Carl told me that I couldn't stay still so they had to have an anesthesiologist sedate me. But this time around I did pretty well; they put a pillow under my legs which put me at just enough of an angle to relieve the pressure off of my back. I'm not claustrophobic so I didn't have an issue with that. They said that it gets really loud during the test so they gave me earplugs, but they were totally useless. I was totally unprepared for all the vibrating and sirens; it felt like there was a jackhammer on my head. But other than that the only real issue I had was when they put the contrast in my IV for the second part of the test. No sooner than they had pushed me back into the machine I started feeling nauseous so they had to stop the test and let me recover.

Sadly I've been unable to nurse Nathan. I was told that I'd have to wait 48 hours after my MRI as a result of the contrast. We're both counting down the hours until we can resume our quality bonding time.

The good, the bad & the ugly

The Good
J finally broke 20 lbs; he weighed in at 20lbs, 2 ozs at his GI appointment last week. The Dr. was very happy with his progress and told us to keep doing what we're doing. If things continue to progress well we can start weaning him from the Prevacid after his next appointment in 3 months.

The Bad
I thought all of my test results came back normal after my seizures. But as it turns out there was a small abnormality in my MRI so the neurologist is ordering another one. My systolic blood pressure was slightly elevated, but honestly, I think I may have white coat syndrome because it's always fine at home.

The Ugly
I still can't drive; 4 more months, ugh!!!

Hearing test

Shortly after Nathan was born he failed his hearing test so he was retested before he was discharged. Since they were unable to confirm normal hearing at that time I was supposed to schedule follow up testing within 2-4 weeks but I totally forgot until his pediatrician called me last week to ask me some questions. I wasn't concerned because Nathan has been reacting to noises and responding to our voices. But I scheduled an appointment for yesterday, and good news, he passed his test with flying colors!

War wounds

It's been 2 1/2 weeks since I got out of the hospital and as much as I want to forget it I'm left with a permanent reminder. Unfortunately I was scarred from all the EEG and other monitoring equipment they had hooked up to me during my stay. And of course the twice daily anti-seizure and blood pressure medication are a constant reminder as well.



Just as I was getting back to normal, early yesterday morning my legs started feeling heavy and I started having back and chest pain, which made Carl nervous since those were some of the symptoms I had prior to my seizures. Needless to say I spent all day in bed taking it easy. But to top it off, last night I started experiencing flu like symptoms and today it turned into a full blown cold.

EGD

Justin had his EGD Thursday; overall it was pretty uneventful. Carl and J arrived at the hospital at 6:45, they took him back to prep him around 8 and the procedure lasted about 30 minutes. He was back in recovery with Carl around 10 o'clock and they left the hospital around 1. Justin took a while to fully recover, but he enjoyed his popsicle in recovery after he woke up. The Dr. didn't find anything unusual but she's going to send the samples off to the lab for testing.

Admitted to hospital

I just can't seem to catch a break, I was admitted to Sinai Grace Wednesday morning after having a seizure. I don't really remember what happened, I only remember waking up to EMS standing over me on a gurney. So I was admitted to antepartum for monitoring because they thought my seizure was pregnancy related even though it's unusual to have pre-eclampsia 7 weeks post partum. I had a cat scan, which was negative, and I was getting ready to be discharged on Thursday when I had another seizure, so I was transferred to Detroit Receiving. I don't remember much of that seizure either, except that I really wanted to go to Beaumont, but since Carl went to school with a neurologist at Receiving he gave him a call and he suggested I be transferred there for a MRI and EEG. Both were negative, so they don't have any clue what caused the seizures. My blood pressure is elevated so they started me on anti-seizure and blood pressure medication. I schedule a follow up appointment Monday to see what the long term plan is. But when i was discharged i was told no driving and drinking for 6 months; that'll definitely be interesting.

Cancelling nephrology appointment

After Justin's ultrasound there was some concern about the size of his kidneys. However, Dr. Hirsch questioned what they were basing that on (i.e. age, size, weight) so she called the head radiologist to discuss the results. As it turns out, they only looked at his age and didn't take into consideration his weight and size. The head radiologist confirmed that J's kidneys are average for his weight and size.

J's kidney blood work came back normal. Dr. Hirsch called today and said to go ahead and cancel our appointment, but she would discuss with the kidney specialist when he's in next Wednesday too see if there's a need for J to be re-evaluated when he's older.

But for now things are looking good and we've eliminated 2 out of 3 potential issues. The last procedure is the EGD next Thursday. But maybe now GI will begin to realize that his small size is due to genetics.

6 week post-partum appt

Once again my blood pressure was high (176/100) so the Dr. manually took my BP and it was 145/85. Still on the higher end but not too bad; and since my blood pressure was monitored after my last appointment and was fine I may just have a case of "white coat syndrome". In any case I'll just monitor it at home to be on the safe side.

I'm back to my pre-pregnancy weight but still have a small bulge. I'm not stressing about it, but I guess I'll do a little exercising and ab work when I can find the time.

Immunology Appointment

The GI Dr. referred Justin to immunology because of the results of his immunoglobulins test. She was concerned with the lower levels of IGA. Low levels of IGA occur in some types of leukemia, kidney damage, problems with the intestines, and a rare inherited disease that affects muscle coordination, all which could increase the chances of developing an autoimmune disease.

Even though Justin's IGA levels are low the Dr. said that they are in the normal range for his age. She asked about his eating habits since he is small for his age. But she's the first specialist to acknowledge that his small stature could very well be due to genetics. Most premature babies experience catch up growth by age 2 but a small number of preemies never fully catch up to where they would have been if born full-term and remain slightly smaller than average throughout their lives.

During her exam she noticed that his skin was dry and mentioned that he may be prone to allergies in the future, but I'm not too worried; after all, it is still winter so of course his skin is dry. She recommended that we stay away from fish, peanuts and eggs until age 3, but other than that we're free to continue experimenting with new foods.

Dr's, we don't need no stinking Dr's

If only that were true. Justin's GI Dr. called today to discuss his blood work and ultrasound results. She's concerned with the abnormal IGA levels, as well as the small size of his kidneys, so she wants Justin to see Dr's in the immunology and nephrology clinics.

Since Dr. Hirsch went over the ultrasound results with me yesterday I wasn't caught off guard when GI referred us to nephrology. Dr. Hirsch plans to discuss J's results with the kidney specialist in her building when he's back in the office next week. She also wants to speak with someone in the immunology clinic to discuss his history and make sure whether or not they really need to see J. I definitely appreciate the second opinions, all this is a lot to take in right now.

Failure to Thrive

That's the official diagnosis by GI. Hearing that really hurt; failure to thrive has such a negative connotation to it and it makes me feel as if I've somehow failed Justin. Oddly enough I find out this information, not from GI, but from the occupational therapist who just called to schedule sessions for Justin.

Justin was being seen by an occupational therapist at Children's Hospital, but our insurance only covers 20 visits so J's last session was last September. I wasn't concerned because he started receiving occupational therapy through Early Intervention around the same time. And although their focus is not on feeding, the OT has been very helpful and given me lots of advice/tricks/tips on getting J to eat.

Impromptu Dr's visit

Nathan's had a yellow discharge from his left eye for the past few days so I took him to the Dr. to get it checked out. As soon as Dr. Hirsch saw his eye she immediately knew he had a blocked tear duct so she prescribed antibiotic eye drops and recommended I start massaging the tear duct. Massaging the tear duct applies pressure on the fluid backed up within the ducts and eventually pops open the membrane and clears the ducts.

Mr. Nathan weighed 7lbs 5 ozs, although that was with a shirt on, which the nurse said probably weighed 2 -3 ozs. But even still, Nathan is well on his way to surpassing his big brother.

I think I've said it before, but I really love Justin and Nathan's pediatrician. I mentioned Justin's GI appointment to Dr. Hirsch so she pulled up the results from his blood work and went over them with me. They checked his hemoglobin levels, tested for Celiac disease, food allergies and a number of other things which I can't recall. The most notable results were that J appears to be allergic to eggs and his IGA levels were slightly abnormal. Dr. Hirsch wasn't too concerned with the IGA levels (an indicator of respiratory issues) since J hasn't really had any recent issues with his lungs or pneumonia. I'm sure I'll get a better understanding of these results at the GI follow up appointment.

I expressed my concerns about the other procedures GI prescribed and Dr. Hirsch said that if they had suggested these months ago she would've questioned them. But at this point they want to ensure there aren't any huge underlying issues affecting his lack of weight gain. She said I can call after he has his ultrasound and she'll go over the results with me.

GI appointment

Weight: 18 lbs, 3 ozs
Length: 28 3/4 inches

Good news is Justin IS growing. His body proportions fall in the average range, meaning he's not malnourished, just small for his age. Bad news is his growth has slowed down and we've yet to see his "catch up" growth.

For the most part Justin's reflux seems to be under control as he only tends to throw up after working himself up into a fit or gagging on newly introduced table food. So at today's GI clinic they made some minor adjustments to his medications. He'll continue with the Prevacid 15mg Solutabs once a day, but they upped his Lactulose from 2.5 ml to 5 ml, which should help him become more regular. I asked about discontinuing the Prevacid but they want to keep him on it until his weight gain picks up some.

For now we'll continue with what we're doing feeding wise (3-4 bottles of Pediasure + 3 meals of solids). But if his weight gain hasn't picked up by our next appointment we'll work with the dietitian on ways to increase his caloric intake.

Ear & Eye Update

Justin had is 1 year hearing test this morning and passed with flying colors. They checked his ear drums and ran a series of tests which all came back normal. They will follow him yearly until age 3 , which is when his risk factors for any hearing loss decrease.

Justin also had a follow up eye exam on Friday. Now that he's almost 1 they've switched the focus from looking for any remaining signs of ROP, to looking at his tracking and following. His eyes look pretty good so he doesn't need to be seen again for 4 months.

We've come a long way from the weekly eye appointments and being told that he had mild hearing loss in one ear.