Thursday, August 24, 2006

Enough Already

Ok. The girls had their big 2-year appointment with their pediatrician yesterday. We've also had an eye doctor appointment and an appointment with the physical medicine doctor since my last update, so I have a lot to report. The most pressing (or should I say DEpressing) news is that Little Miss Eden is STILL very sick. It actually all started on their birthday of all days. Holland came down with a fever of about 103. I took her to the doctor, who thought it might be Hand-Foot-Mouth. I'm not sure that's what is was because her only symptoms were fever and loss of appetite. She was totally better in 4 days. On the fifth day Eden came down with the same fever (the day of her bday party). Her fever also went away in 4 days. She seemed better for MAYBE 4 days, then started getting a sore throat.

Last Thursday I took her in to see the pedi because her throat was really swollen, inflamed, and had big white spots on it. The doc she saw that day thought she might have Mono (the strep culture was negative). So, we just planned to wait it out because, obviously, antibiotics don't work with a virus. However, instead of getting better, Eden seemed to be getting worse. Her throat continued to hurt and she started getting very congested. Yesterday between her swollen tonsils and adenoids, and her congestion, she could hardly breathe without her mouth wide open and her tongue out. And of course, through it all she has refused to eat all solid food and has been on a formula only diet for practically the past two weeks. Poor Baby.

Of course this HAD to happen just in time for the big 2-year appt where they get weighed and plotted on the official growth chart. Needless to say, it wasn't good news for Eden. She went from 17 pounds 15 ounces on May 31, to 17 pounds 12 onces. She did grow in length and head circumference, so now she looks like a long skinny twig with a big ole head. Lucky she has those big beautiful eyes and that stunning smile to distract people from noticing that she has NO meat on her bones.

So their pedi spent a good 10 minutes explaining to me that she is FINE and I shouldn't WORRY so much. Her head growth seems to be leveling off at around the 50th percentile for her chronological age. This is good news, because once her head stops growing so fast, her body should have a chance to catch up. She has gained a little bit of weight since her 18-month appt, and the doc thinks we can't put too much stock in yesterday's weight because she has been sick. So okay. I will TRY to stop obsessing over it. I will TRY to stop imagining that she will NEVER eat and that she will have to have a feeding tube. I will TRY to stop thinking that she won't hit 20 pounds before her fourth birthday. Okay, I will TRY. But I am not making any promises.

We are going to start Eden on Zantac to see if that will make any difference in her eating. She does have reflux, and it could be that it is making her throat just sore enough that eating is uncomfortable. We'll see if it helps.

So, back to the sickness. Our pedi definitely wants to rule out mono and suggested that we do the bloodwork to find out for sure. If is IS mono, Eden could get a steroid to help with the inflammation and swelling of her throat. So, after the appt we went downstairs to get the blood drawn. A nurse from the office actually went with us to warn the nurses drawing the blood that Eden tends to hold her breath and pass out when she gets shots. Eden actually did very well with the first poke, except that the vein collapsed before they could get enough blood. When the nurse put the tourniquet around her other arm to see if she could find another vein, Eden LOST IT. She did the WORST breath holding spell I've ever seen. And I've seen a lot of them (every month when she had her Synagis shots). She started to cry and held her breath until she turned blue and passed out. Then to top it all off, went rigid like she was having a seizure. Obviously the nurse taking the blood had never seen a child do this before. She's yelling "shake her, shake her" and then "she's having a seizure!!!" like a maniac. Okay, I had seen the turn blue and pass out thing before, so that was NO surprise. In fact I was expecting it. I HADN'T seen the whole seizure thing before, so was totally freaked out. I started bawling, and went running out of the office back upstairs to see our pedi again (luckily they are in the same bldg). The nurse from upstairs came with me. Everyone in the waiting room heard the drama and saw me running out of there crying with my baby, who at that time WAS breathing again, but was very lethargic and still not a very pleasant color.

So, once again, our ever patient and kind pediatrician sat with me to talk some sense into me. He said it WAS NOT a seizure, but rather the body's reaction to the sudden drop of blood pressure and lack of oxygen to the brain. Not at all uncommon for these little breath holders. So, I got it together well enough to get us all out to the car and loaded up. Then I sat in the car for 10 minutes and had a total meltdown. Though I have had MANY meltdowns since these girls were born, it's been a while since I had one of that magnitude. Thank GOD my mom was with me or I have no clue what I would have done.

Anyway, it's all over now and we're all home and happy. Eden seemed to be feeling slightly better today, and I am hoping that tomorrow will also be a better day. We'll have the results of the bloodwork (what they could get anyway) by Saturday. If it's NOT mono, then it's viral pharyngitis and we just have to wait it out. Thank goodness for Tylenol. And Vodka.

So, the other big new of the past couple of weeks concerns Holland. At the eye doctor we found out that her eyes are still crossing ever so slightly, but it is mild and alternates eyes, so patching is not necessary at this point. We also know that she is still using both eyes equally well to see, and does not need glasses quite yet. So, as far as the eyes go, we're continuing to wait and see, which is fine with me because Holland seems to be seeing well enough at home. She watches tv across the room, looks at books, recognizes faces, etc, so it's not really a problem yet.

At the physical medicine doctor Holland got an official diagnosis of Cerebral Palsy. This also was not a surprise to us, because I have suspected it would happen for the past 6 months or so. In a nutshell, CP is just abnormal tone caused by some sort of brain injury. Holland has low tone through her whole body, and her left side has been slightly slower in developing than her right. As a result of the hypotonia, Holland ankles, knees, and other joints are really loose. It's hard to describe, but this is what is holding her back from walking. The low tone in her legs and trunk make her ankles very wobbly when she tries to walk and she has a hard time keeping her balance. She absolutely WILL walk though, and likely as an adult you won't even be able to tell she has CP.

In the past, Holland's type of CP would have been categorized as "hypotonic CP" and Eden's as "spastic diplegia." These titles really don't give you much information about exactly what the child is like, or how the CP affects them. Because of this, and many other reasons I am sure, doctors are moving away from this system, and toward a new system where the diagnosis is just Cerebral Palsy. The new classification system has 5 levels, with level 1 being the most mild, and level 5 being the most severe. Holland's CP would be classified as Level 1, and Eden's as between levels 3 and 4.

Okay, okay. I know this is getting long and boring, so I will try to finish up. At her 2-year appt Holly weighed a whopping 20 pounds 3 ounces! Since getting better (around August 5th) she has been eating much better. I mean, she still doesn't eat as much as I want her to, but it is better. Holland is also discovering her silly side, and we are enjoying it immensely. What a FUNNY girl she is!

I am sure that there is so much more to say. When I remember what it is, I'll let you know:)


Allison said...

What a long few days! The pics are great as always. I am so glad that you have a Ped. that you love!

M said...

Wow, I can't even begin to imagine how frightening that passing out episode was. And what a wonderful nurse to keep her cool so as not to freak you out?! I think you're entitled to as many breakdowns and as much vodka as you decide you need after that. It's good to hear that despite your concerns the dr thinks the girls are doing great. That speaks volumes about you as a mom!

Anonymous said...

Oh my it sounds like it has not been boring at your house.... has it ever though? I am glad that youwere able to break down and get out your emotions. The girls are gorgeous and look very healthy in those great pictures! Keep on keepin on - that is all any of us can really do!

Tertia said...

What a tough, tough time you have been having! I take my hat off to you. I take enormous strain with them been mildly sick for a few days and look what you have had to deal with. You are a power woman, for sure.

Poor little Eden, it sucks being sick. Big smooch to all three of us.


Anonymous said...

Hang in there sweetie. You're such a good hero in the mom arena!!
The girls are beautiful as always, thanks for updating us with your great posts.
Hey to John!!

Love, Jules

MamaChristy said...

You are doing such a fantasic job with the girls! Don't forget that! I hope that whatever Eden has, they can give her SOMETHING to give her a little relief.

The photo of Holland reading the "Potty Training Tips" booklet with such an intent look on her face is priceless.

Anonymous said...

You and your girls are truly remarkable! We are hoping that Eden will be back to herself in no time. You needed that breakdown, thank goodness your mom was with you. I always appreciate your candidness, and as always, the girls are gorgeous!

Anonymous said...

Wow, what an exhausting and stressful day. I hope Eden is feeling much better soon, and regains her appetite. Especially I hope the Zantac helps her. Our son is on two reflux meds, and they make a big difference to him. His respirologist also ascribes most of his asthma symptoms to the reflux and aspiration. I hope controlling the acid helps E a lot.

Your girls are so sweet, and have made terrific progress, no matter what diagnostic labels they are given. They bloom just like the water lilies in your blog photo.

Best wishes,

Anonymous said...

Hello! I am also a mom in the Detroit area with 24 weeker twins born August 2004. Both of my kids also have CP. Just wanted to drop a note to say hello and my thoughts are with you. I really enjoyed coming across your site! Karen

Kendra Lynn said...

Dear Billie:
I'm so sorry you had such a traumatic time with Eden getting her blood drawn.
I can't even take Merry when she has to have shots or get her blood drawn. My mom and Scott have to take her. I"m really bad with needles, and get faint...but the worst part is, when she starts screaming and they have to hold her down, it totally breaks my heart!
I've had near breakdowns as well, over stuff like that.
I love you, and I hope that Eden starts feeling better soon, and that the stress goes away soon.


Michelle said...

How scary it must have been to go through that with Eden! I can imagine I'd have a breakdown after all that as well. What a tough few weeks it's been for you guys. The girls look so stinkin cute & so sweet! At least Holland can benefit from having some good therapies now that she has an official dianosis of CP. I don't know, was she already receiving services from E.I.? Glad to hear that the Dr. thinks the girls are doing so well. I like you, always go in with all these worries & concerns usually only to have the Dr. say they're doing fine. You're doing such a great job Billie!

Anonymous said...

Congratulations on the 2nd year birthday. Your daughters are amazing and so are you! God bless you all! Lisa

Unknown said...

Holy cow woman! You have been through a rough patch, sweetie. I am so sorry to hear about the breath holding episode, that must have been so scary! You are so strong to handle it all, and meltdowns are part of the territory. (dont know where Id be without them...)
By the way, what is the difference between a physical medicine doctor and the pediatrician?
Your girls are so beautiful! I so enjoy watching them grow :) Love the pic of Holland "reading" the potty training booklet.

Billie said...

The physical medicine doctor works kind of as a case manager for people with CP (and other physical disabilities). They will monitor bone growth and muscles, and will do botox or some other procedures as necessary.

We have an appt with an Orthopedic Surgeon at the end of Sept. The physical medicine doctor referred us. I guess they will look at Holland's chest, and Eden's spine and ribs, to make sure that they don't need surgery, or have problems with their bones that will interfere with growth.

There are so many different docs who do diff things that I have a hard time keeping them straight!!!