My Morganizer

I started an additional blog, called "My Morganizer", to write down smaller vignettes, from my days with Morgan.  Even though her allergies are a big part of our lives, we still spend a lot of time laughing, singing, playing and hugging and snuggling! :)  She amazes me all the time and I'm doing my best to record it all, one way or another.

http://mymorganizer.blogspot.com/

Allergies, allergies, allergies...

It has been a while since I have posted here.  I think, one of these days, I'll just have to download all my Facebook statuses and compile them as a journal. ;P  Anyway, what brings me here, today, is the latest set of food allergy results for Morgan.  At 18 months, we had her tested and they did the "Childhood Allergy Profile" for her and we found she had allergies to peanuts, milk, eggs, wheat, walnuts, and soy.  A couple of weeks ago (around age 2 1/2) we had some additional tests done for cinnamon, avocado, strawberries, tomatoes, coconut and sesame seeds.  All of them came back positive for allergies, except for cinnamon.  The lab forgot to test for bananas, so we called them and had them add a few more tests to the list.  We added tuna, pineapple, peaches, flax seed, and banana.  All of them came back positive, except for tuna. :O

So, this is now Morgan's known allergen list:

Class 5
Peanuts
Milk
Egg whites

Class 3
Coconut
Sesame seed
Flax seed (Awaiting class confirmation from the lab report...)

Class 2
Wheat
Walnut (therefore, all tree nuts, in my book...)
Soy
Bananas
Avocado
Strawberry
Tomato
Pineapple
Peaches


She also has a Class 4 allergy to cats and a Class 3 allergy to dogs.  So, those are off the menu. ;)  (That's my allergy joke. Har, har!)

It's still going to be a great year!

What a way to start the year...

(This is a long post, so if you start to fall asleep, you can skip to the bottom, because I'd like to share an important point...)

Last night, I made Morgan a loaf of bread in the bread machine.  I wanted her to have a nice treat for the next day.  We didn't get to celebrate Christmas with Greg's parents, last week, because we were all sick.  Today was "redo" day.  So, this morning, I gave Morgan a slice of her "special" bread and a while later, she was acting clingy and fussy and itching all over.  She had been itchy these past few days, but when Greg lifted her shirt, I saw a familiar-looking rash on her side.  He asked what we had given her that was different and I said, "nothing..."  He asked about the bread and said it was the same kind I used a while back.  I went and dug around for the box in the trash and realized that I had bought the same brand, but not the same variety.  This time, I got the "sandwich bread" mix, and right there on the ingredients list, like a slap in the face, the words "whey (milk)" and "Contains: Milk" are staring at me!  I felt like a complete idiot.  I had read the directions on the back, which call for eggs and I used egg substitute, of course, but I didn't even read the side panel, since I thought it was already cleared as "safe".  Poor Morgan was itching and itching and whining and moaning.  The last time she had milk, it was in the form of goat's milk yogurt, and it made her throw up.

I was waiting for her to hurl, any moment, but instead, she was very fussy and began crying/screaming.  She was scratching at her neck/throat and I asked her if her if there was something wrong with her throat and she said "my throat itches".  I started to panic a bit, on the inside, and went to the cabinet and got the Benadryl.  As I said, usually her milk allergy manifests in vomiting/eczema, so I wasn't sure if the skin on her neck itched, or if something was going on inside.  I gave her 1/2 tsp. of Benadryl and did her "puffer" (Flovent).  I sat with her and watched her like a hawk.  She was crying/screaming, still, and I was trying to get her to stop crying, because her nose was already stuffy and she was very snotty and couldn't breathe out of her nose.  Then, in between loud cries, she lay herself on the floor and grabbed at her neck and was wheezing a little.  I grabbed her and got the diaper bag and some of her milk (hemp milk) and told Greg we had to go to Little Spurs Pediatric Urgent Care - NOW.  I debated about using the Epi-Pen, but didn't want to overreact.  We live 4 minutes from Little Spurs Pediatric Urgent care, and luckily they had just opened and we were the first ones there...Morgan cried all the way there, and as much as I hated to hear it, I was glad, because it meant she was breathing.  I knew it wasn't a guarantee, though, that she was breathing well and getting enough oxygen.     

When we got there, I explained that Morgan had a Class 5 allergy to milk and that I had given her bread with milk in it, by mistake, and she was having trouble breathing.  They took her in right away and, sure enough, her pulse ox (oxygen saturation) was 87 (It should be 95 or higher).  They brought in a mask and gave her some oxygen.  As I'm holding her, they're telling me that if they can't get her oxygen levels up, they have to transport us to the ER via ambulance, because we are not allowed to drive ourselves there, for safety/liability reasons, I presume.  I am fighting back the tears, but pull it together, for Morgan's sake.  Meanwhile, Morgan's resting her head, peacefully on my chest, breathing her oxygen without any fuss, which is good, but unsettling, because she's "too" cooperative, if you know what I mean.  They tested her, again, though, and her oxygen levels were on the rise! Thank goodness!  They brought in some albuterol, to do a breathing treatment and her levels got even better.  They then gave her prednisolone (oral steroid) and Morgan was such a good girl, taking her medicine, without any fuss.  By this point, she's talking, counting the apples painted on the floor, and otherwise fine.  The doctor was skeptical, though, when I told her the milk did this to her, because she said given her history of vomiting/eczema, that it would be odd for just milk baked into something to have caused such a reaction.  She asked if Morgan had Mountain Cedar allergies and I told her that I think the blood tests only covered food allergies and she said the Mountain Cedar levels were very high, right now, and causing a lot of respiratory issues, around town.  Also, Morgan had been sick and was on her last day of antibiotics, so that didn't help.  I guess it was a combination of many factors, but my mistake certainly put Morgan over the edge and I felt terrible.

After the commotion, I was talking with the nurse and asking if I should have used the EpiPen.  She said I could have and it would have been an acceptable thing to do.  In this case, her airways weren't closing very rapidly and she was OK without it, but she said, the thing is, you never know how much time you have, with an allergic reaction situation and it's best to err on the side of caution.  The silly thing is that I had just read an article, two days ago, from Kids with Food Allergies, about the EpiPen and how it's not as scary as it seems, and the needle is REALLY small, even though it comes in this huge dispenser.  The needle is way smaller than those used for vaccinations and delivers a very small dose of medication.  Even so, I was still hesitant to "pull the trigger" when the time came.  

She said, in the future, if there is a known ingestion of an allergenic food, with any breathing difficulty, the process is to administer the EpiPen, and then head straight to the ER.  She said if we feel we have the time, we should drive to either Methodist Children's Hospital in Stone Oak or Santa Rosa, downtown.  She said our local ER (Northeast Methodist) is not really set up to handle pediatric cases.  We have taken Morgan there, a couple of months ago, and they took good care of her, but I know they don't have all the pediatric equipment necessary. 
Edited to add: Knowing what I know now, I would say the thing to do is administer the EpiPen and call 911.  Then, the ambulance can take us to the Children's Hospital.

We explained that Morgan has been on oral steroids and breathing treatments, before, but all stemming from viruses, and she said in those cases, we should go to the ER, but the Epi-Pen is not necessary.  That's just for acute allergic reactions.

They gave us a home nebulizer, to administer treatments every 4 hours, for the next day or so.  They were surprised that we didn't already have one, but I guess since we had the puffer-spacer for the Flovent, we didn't think we needed one, which obviously wasn't right, since Flovent is not for rescue purposes.  Well, now we have one, so that's good.

Meanwhile, Greg's parents had arrived at our house and when we got back home, Morgan was perfectly fine and you couldn't tell what a harrowing morning she had.  Since she was on the oral steroid (and due to all the excitement) she skipped her nap, and got to spend some quality time with Grandma and Grandpa.  We all opened our presents and had a really great time.  The Benadryl and oral steroid cleared up her runny/stuffy nose and cleared up her skin like magic, and she's in better condition that she was yesterday, so there is a silver lining, but I'm not too happy about the route we took to get to this point.  I keep trying to tell myself that it's just good that I reacted quickly and was able to get her treated early and with little residual effects, but I can't help kicking myself for making the mistake in the first place.  I know it's all a learning experience, but it breaks my heart that these lessons are learned at Morgan's expense.  It's unsettling to know that my mistakes can affect her health so severely.  I'm so thankful, though, that she is such a strong little girl and bounces back so well and still has smiles for me every day.  

Part of my reason for sharing this whole ordeal is to let people know that if you have a child with severe food allergies, who has a bad reaction to a food, don't hesitate to administer the Epi-Pen!  I didn't do it, in this case, but I was very lucky that we were seen quickly, and that she only ingested a small amount of milk protein, etc.  The Epi-Pen is just a medicine, and the needle is very thin and you can administer it through a pant leg, in an emergency.  If they don't "need" it, it will most likely not hurt them and if they DO need it, it can save them.  I think my problem is that I envision the scene from "Pulp Fiction" where they inject Uma Thurman's character in the heart with an adrenaline needle as long as my arm.  The Epi Pen is nothing like that and Morgan, in her distress, would probably not even notice it.  I won't be jabbing her for every cough, but if the time comes again (and I hope it doesn't), I'm going to use it.  I have to keep telling myself that it's OK, and that's what it's there for, and it helps more than it hurts.

So, that's how we started off 2011, how about you?  It's a good thing I don't believe in bad luck.  I'm sad and feeling guilty about how all this happened, but I know she's doing great now and can breathe better than the day before, and we just have to keep learning and moving forward.  Just to show she's doing A-OK, now, I'm attaching a picture of the strongest little toddler, named MORGAN! 

Photo Session with Jackie Willome Photography!

I'm over the moon about the promotional pictures taken by Jackie Willome Photography, yesterday! Click the photo below, to see a slideshow!

SEVEN MONTHS BEHIND!

Wow, time really does fly. It has been 7 months since my last post! Wow, I guess I'll have to go over the highlights month by month.

April 2010 - Let's see...Morgan turned 17 months in April. She was identifying the letters in her name, saying several words like "Mommy", "Daddy", "baby", and all kinds of other words. She could identify the letters in her name and "read" it, although she'd say (and still says), "Morney", instead of "Morgan". :)

May 2010 - This month was actually pretty eventful. She had her 18-month check-up and these were her stats: Height 33 1/2" (90th percentile), Weight 25 lbs., 10 oz. (70th), and her Head Circumference was in the 90th percentile.

Her eczema still wasn't completely cleared up, so despite being told several times that a blood test for allergies might be pointless, I requested that one be done. The process of drawing Morgan's blood was temporarily traumatic, but the results were worth knowing.

Morgan has the following allergies: (Allergies are rated in Classes 1 to 6, with 6 being the most severe...)

Class 5 - Milk, Egg Whites, Peanuts

Class 4 - Cat Dander

Class 3 - Dog Dander

Class 2 - Soy, Wheat and Walnut

THAT WAS A SURPRISE! I did not expect that many allergies. I was particularly taken aback by the soy allergy, given that we had been giving her soy formula and then soy milk. It certainly explained why her eczema hadn't cleared up all the way. We got a referral to an allergist and she told us to take Morgan off all the allergenic items and keep her away from cat and dog dander for 2 full months. The improvement was marked, albeit slow.

June 2010 to present - I've made a zillion trips to Whole Foods since there and should have a parking spot with my name on it. :) We tried rice milk, at first, but then I found HEMP MILK! Before you start to giggle, please note that there is 0.00% THC in hemp milk. I am NOT getting my baby high! It has Omega 3 and Omega 6 and all kinds of wonderful vitamins and minerals and Morgan loooooooves it. It's a little on the pricey side, because hemp cannot be grown in the U.S. and it has to be imported from Canada. It's the stupidest thing I've ever heard. Basically, they can't tell the difference between hemp and cannabis (which would be used to make marijuana), so they've made it illegal to grow either one. I think it's awful, given all the many benefits of hemp, but that'd be a story for another blog post.

As part of her diagnosis with a severe peanut allergy, I was given 2 Epi-Pens. Epi-Pens are used to deliver an emergency dose of epinephrine, in the case a severe allergic reaction, with the risk of anaphylactic shock. It was a little nerve-wracking to know that we now had a need for such a thing, but as far as we know, Morgan has never been exposed to peanuts, so hopefully, we won't ever have to use it.

We had some minor setbacks in the quest for safe foods. I once tried goat's milk yogurt, because the label stated that it "may be tolerated by many with milk allergies". Hmm, well NOT MORGAN! :( My poor baby projectile-vomited all over the place and that was the last time I tried anything even remotely suspicious.

I know that all sounds bad, but Morgan is actually doing very well. Her skin has pretty much cleared up and her only problem areas are her hands. She's still so very happy and smiley.

She's almost 23 months old now and will be turning two mid-November! She talks SO much now and she completely amazes me with all that she learns. She can almost count to 20, she knows all her letters, she can identifies dozens of animals. She's even speaking in 5-word sentences, lately. She has been watching a lot of Dora the Explorer. I never thought I'd watch that show, but she learns SO much from it! She can count to 3 in Spanish and knows a few other words, like "cuidado" and "hola". She talks along with the show, sometimes, and she even forms her own sentences. She came in the other day and said "my stroller is in there". She said all 5 words, not just "stroller there", but a complete sentence! She even sings, which is the most beautiful sound I've ever heard. I don't mean that she'll be doing opera soon, but I mean that her little voice is so sweet to my ears. :) I'm hoping to get a little video of it, soon. I do have one of her saying her "ABCs", that I will post.

I'm going to bed, but hopefully it won't be another 7 months before I post, again. Good night!

Oh, and here is an updated picture of Morgan!

Doctors, doctors, and more doctors!

As usual, I am behind in my blogging. My friend started her own blog today, and that reminded me that I haven't updated mine.

A couple of weeks after my last blog update, a member of our playgroup, Kymberli Johnson, passed away from complications of a sudden illness. She was a wonderful mother to her 2-year-old daughter, Skylar, and was a vivacious person, full of laughter. Her unexpected passing was so sad and tragic. As a fellow mother, my heart broke for her sweet little girl and all those who were close to her. I really don't know what to say about it, as even now, it seems surreal.

On a day in late January, something seemed a little off with Morgan. She didn't have a fever, but she was coughing a bit and just didn't seem to be herself. I made an appointment and when I took her in, she was all smiles. I felt silly taking in a healthy-looking baby, but I already had the appointment made. Well, it turned out that she had tonsillitis. The doctor said we were lucky that I brought her in early, as it could have turned into an ear infection, too. He put her on antibiotics. We were also lucky that we got the antibiotics started and she never spiked a fever. The doctor said a fever of 103 is standard with tonsillitis, but she never registered one.

In mid-February, Morgan had her 15-month appointment. These were her stats:
--Weight: 24 lbs., 6 oz. (75th percentile)
--Height: 31 1/4 inches (75th percentile)
--Head circumference: didn't get the exact measurement (90th percentile)

At that appointment, I asked about the little cough she had and the doctor said she had a minor upper-respiratory infection, and all we could do was provide "symptomatic care", which would mean using a humidifier (which we already do, nightly) and run a steamy hot shower, when needed. About a week after that appointment, she seemed to have some trouble breathing before bedtime. I was getting nervous, because her chest was sinking in, instead of expanding, when she inhaled. She was taking rather shallow breaths and it seemed to be difficult for her to get air. I held her upright in the glider for a while, and we did the hot shower treatment. She seemed OK, after a while, and we put her to bed. During the night, she'd wake up, cry, stand up, then lay back down and go to sleep. She did this several times and I finally went to pick her up at 5:30 and she was sweating profusely and sounded like she was having trouble breathing, again. I felt like the worst mother in the world for not going to her, sooner, but I was exhausted. I held her most of the morning, and my husband held her for a while, too, because we didn't want to lay her back down. I kept debating whether or not to take her to the ER. She wasn't turning blue or anything, but I just didn't like the sound of her breathing. We got her an appointment at the pediatrician's office. The doctor said he could hear a little wheezing and gave her a breathing treatment. It was this oxygen-mask-looking contraption and Morgan hated it. I am not surprised, as it made this horrible noise and spewed vapors in her face. They gave us an at-home version to use, with an inhaler. They also gave us a prescription for a 5-day course of oral steroids, to help with her cough/breathing.

The oral steroids worked beautifully! Her breathing went back to normal and her cough subsided. We didn't end up needing to do the breathing treatment. As an added bonus, her eczema went into complete remission. Her dermatologist had wanted to put her on a short round of oral steroids once before, but we were hesitant. This time, it was for her breathing, and worth the potential risk. Well, I say "risk", but it was just a perceived risk. The oral steroids, for short periods, are very safe. Her skin looked great and I almost wanted to cry with happiness. She wasn't scratching and she seemed even happier than her normal happy self. However, the day after going off the meds, her rash came back full-force and the reprieve was short-lived. I do see, though, that we can turn to the oral steroids when her eczema is out of control.

On the second day of March, I went with my mom to see her Primary Care Physician (PCP). She just got on Medicare and hasn't had a regular check-up in 20 years! To make a long story short(er), we were at the doctor's office for about 2 1/2 hours and after I took her home, I had to take myself to the walk-in clinic, because I had lost my voice the night before. After another 2 hours of doctor's office time, I found out that I had laryngitis. Yippy Skippy. They gave me a steroid shot in the tush (dexamethasone) and a prescription for Lodrane D. The Lodrane D had pseudoephedrine, which I've always hated. I hadn't taken it in years, and I took it against my better judgment. Well, that was a big mistake, as it triggered a muscle weakness attack, due to my HKPP, and I was pretty much paralyzed. I couldn't get out of bed without help and I could barely walk for most of the next day. My husband had to take the day off from work to help me, as I could not hold Morgan. Both my parents came over the following day, so my husband could go back to work, and to help me with Morgan. I missed holding her in my arms, but knew I was lucky that I'd be able to hold her soon enough. I felt bad for needing so much help, but so grateful that I have a support base of loving family. After a couple days, I was pretty much recovered. I was happy because, sometimes, the weakness episodes can drag on and on. On Friday, I returned to the walk-in clinic to see about getting an alternative to the Lodrane D. My dear friend offered to watch Morgan for a while, so Morgan could play with her twins. I thought I was going to cry, because my sweet baby hadn't had a playdate in so long. It was wonderful to see her playing with her friends, again. While she was having her playdate, I went to the clinic, but found out that there was a 2-hour wait. The receptionist gave me a card and told me I could call back later to see if they were less busy later. I walked out, but then turned around and decided that I could just ask for the same prescription I had the last time I was there with a sinus infection. As luck would have it, my original doctor was getting something from the front office! She saw me and asked how I was doing and I explained. She gave me a username and password to a website where I could see my prescriptions. She told me I had refills of the nasal spray that would help keep an infection at bay. Hooray! I didn't have to wait to be seen or anything. Thank heaven for small miracles. :) I refilled the prescription and so far, do not have a sinus infection.

This was all a couple of days ago, and Morgan's pretty much doing fine. She's still itchy and coughs here and there, but she's in good spirits and learning and growing before my eyes. Oh, that reminds me, at the last doctor visit, the ped. asked how many words she was saying. I told him that I had counted about 15-20 words and he said she was way ahead of the curve. He said at her age they expect about 6 words, aside from "mama" and "dada". She was slow to start walking, but I'm not surprised that she'd be ahead of the game where talking was concerned. Her mom's quite the chatterbox! OK, I need to post this and resume writing later, sorry...

Woefully Behind on Blogging!

Yikes! Seeing my friend's blog post reminded me that I am so very behind on my own!

Morgan is almost 14 months old and, as usual, I cannot believe it. Let's see...where did I leave off in my last post? Ah, yes, Morgan was still on soy formula, after a losing battle with whole milk. Well, we switched her over to soy milk without a problem. She didn't even notice or protest the switch in bottle contents. The problem for us is not switching from soy formula to soy milk, but from bottle to sippy cup. Morgan will drink water or juice from a sippy cup just fine. If I put milk in one, she looks at me like I have a frog on my head (obscure Joaquin Phoenix reference). She'll throw the cup on the ground and point to her bottles. Put the bottles away, you say? Well, then she points to where the bottles used to be. She knows what she wants and she wants it NOW! It's funny how indignant she can get, at such a young age. She just has a sweet, sweet love affair going on with her bottles. I must admit, that I am not too eager to pitch them in the trash. I love snuggling her when she drinks (I don't snuggle her for all her bottles.) She has about 3-4 bottles a day and I'm back to giving her milk before her naps. I know, I know...it just works so well for us, right now. I give her a bottle, maybe read her a book or two, and then I rock her to sleep.

I swear, lately, it's like I'm doing everything "wrong," but she is sleeping so much better. I think it's because we went through sleep training at 8 months and she learned how to self-soothe, so now me giving her a bottle and rocking her doesn't mess up her sleep. Somewhere along the way, I got back to doing the things that used to have her waking up every 1-2 hours, but now she sleeps through the night. I enjoy my time rocking her...holding onto my "little baby" as long as I can.

This is a recent phenomenon, though. For a while, she was waking up once a night, "needing" milk. It was right after the beginning of the year, that she stopped needing a bottle during the night. She would just cry once or twice in her sleep (when turning over, getting comfortable again) and then continue sleeping. Now, she pretty much sleeps soundly all night. She is an early riser, though. She's up by 6:00/6:30, most mornings. Some mornings, it's more like 5:30, but we let her fuss on and off until 6:00. She doesn't cry, she just sort of "calls us" in her sleep. I check the monitor and she's not really awake, but saying, "hey, I'm waking up here...is it time to get up?" We don't answer that question until at least 6:00 a.m.

She started taking her first steps a couple of weeks after her first birthday. She's nearing 14 months and can now walk all around the house, but she still needs to pull up on something, even if it's just the wall, to get to a standing position. She hasn't quite figured out how to get up off the floor. That's fine by me...take it easy, baby!

She's growing up so much, lately, seeming like quite the little person. She makes funny facial expressions and she laughs more, spontaneously. My picture taking has dropped, as I'm so busy chasing her around and don't seem to be able to snap as many shots. I do still take videos, when I have the chance.

Here's one picture I managed to take, while she was playing under the kitchen table: