Monday, August 30, 2010

Yellow Light

So when I picked up Emma from school today, one of the questions I had for her was whether or not she took a nap during naptime. She said no, that she got in trouble during nap and had to move her mat. AND she got her marker moved from green to yellow for the 1st time. (Momentous occasion!) When I asked her why she got in trouble she replied..."I was just playing with Arabella during naptime."

And so school begins!

Monday, August 9, 2010

Carol Joy is 4 months old!!

Wow!! Can you believe it???



... you had some growing pains this month with waking up repeatedly in the night to eat, but you have gotten back down to your sleeping schedule of around 9pm- 5am.
... we switched out your 0-3 months clothes for 3-6 months! It was so fun getting out your big sister's old clothes and reliving those memories!!
... we haven't had your 4 month appointment yet, but I think you are around 12 pounds. You bulked up some more this month!
... you are fully a formula baby now, and at the end of this month we introduced rice cereal into your formula-- you gobbled it all down!
... you roll easily from your tummy to your back....and you often wake yourself up at night because you have rolled to your back and you can't get back! But mommy just comes and rolls you over and you go right back to sleep!
...you moved into your room this month! You and your sister now share a room- for what will probably be years to come! I will sometimes come into your room in the morning and you and your sister are just "talking" back and forth to each other as your sister has climbed into your crib to keep you company!
... you smile and laugh ALL THE TIME! you love it when someone smiles at you, the only time you don't give one back is when you are hungry!
... you have started to grab and reach for things, and have discovered your mouth and your feet!!
... you really like to stand up (with help, of course!). We think you will be a walker, chasing after your sister before we know it!
... you are pretty laid back! You don't mind just watching mommy in your bouncy chair!
... you went swimming for the 1st time! Overall, you like it ok...just wait until next summer!

Thursday, August 5, 2010

Good news!

So we got good news at the neurosurgeon today! Yay!!

- Daniel definitely has a large cyst in the back of his brain. The surgeon said it was a pretty big one, and he's probably had it since birth. It's pretty amazing to see on the CT scan and MRI how big it is...
-...but it doesn't seem to be adding any undue pressure on his brain. The ventricles in his brain are not ballooned or misformed, and his skull is not thin (due to pressure on it).
- The dr thinks Daniel's head issues are completely sinus related. Both of his sinuses have blockage, especially the right side. He also thinks Daniel has a vertigo problem that can probably be helped with some particular exercises.
- He has sent Daniel to see an ENT to get his sinuses cleared out (which might involve an outpatient surgery to clean them out surgically) as well as an opthamalogist to check the pressure of his brain against his eyes (to check to make sure there isn't extra pressure from the cyst).
-Once he has those taken care of, we'll go back to the neurosurgeon and re-evaluate his symptoms. At this point, he doesn't think draining the cyst would make any difference. Daniel will get another MRI in 6 months-1 year to just see if it is growing right now.

So we are relieved, to say the least! Thank you for all of your love, support, and prayers. While we are not out of the woods yet, and Daniel is still in constant pain due to the headache, we feel so relieved right now that it was not worst-case scenerio!

Tuesday, August 3, 2010

Arachnoid what?

Over the past 3-4 weeks, Daniel has experienced a constant headache and some vertigo/equilibrium problems. He would get really dizzy if he moved quickly, bounced Carol up and down, or even while watching the bright colors and movements of Beauty and the Beast for Emma's birthday. So he finally went to the doctors last week, thinking he just had a really bad sinus infection.

He saw the PA at the clinic, and she not only got him some antibiotics for a slight sinusitis problem, but she ordered a cat-scan just to check stuff out. On his cat-scan there was some shadowing and an MRI yesterday confirmed that Daniel has an "arachnoid cyst" on his brain stem.

An arachnoid cyst is a fluid-filled sac that is located between the brain or spinal cord and the arachnoid membrane, one of the three membranes that cover the brain and spinal cord. It is usually a congenital birth defect, one that goes unnoticed in most cases because it never gets big enough to cause symptoms. So Daniel has probably had it since birth, and it has slowly been filling , until now where it is now approximately 8 cm by 3 cm in size. Typical symptoms of an arachnoid cyst around the brain include headache, nausea and vomiting, seizures, hearing and visual disturbances, vertigo, and difficulties with balance and walking-- all signs he has shown except for the vomiting.

Untreated, arachnoid cysts may cause permanent severe neurological damage when progressive expansion of the cyst(s) or hemorrhage injures the brain or spinal cord. Symptoms usually resolve or improve with treatment. So obviously, we want treatment! Daniel will meet with a neurosurgeon in the next few days, one that my dad knows and recommends through Arlington Memorial Hospital. Treatment will involve surgery of some sort to drain the cyst and possibly insert a brain shunt to keep the cyst from building up again.

The good news that we can see through this diagnosis is that it is treatable, and it explains all of Daniel's symptoms, some now that he looks back in his life and sees that there are many times he was probably experiencing symptoms unknowingly. He has often had equilibrium/vertigo and numbing of appendages issues, so maybe this is partly to blame for a lot of those.


As we step into this new medical challenge in our lives we would ask for prayer in the following ways:


- wisdom of how to proceed medically
- peace for our hearts and spirits as we face surgery
- peace against feelings of "why us"- I especially struggle with this. We know that God uses medicine and surgeons to bring healing- a lesson learned through Emma's four heart surgeries. However, on top of Emma's health problems and a slew of other medical issues and rough times in the past 4 years, it is hard not to fall into the trap of "it's not fair!" or to get completely discouraged.
- wisdom to know how the recovery will affect Daniel's ability to work and my ability to stay home with the girls- just so many unknowns at this point.
- wisdom of how to tell Emma when the time comes. She's a smart cookie, but luckily we just had a positive experience for her at the hospital with Carol's arrival- we don't want a hospital to be a scary place for her since it will continue to be a constant presence in her life. We also want things to be as normal as possible as her new school year begins.

As plans are made and we meet with the specialists, we will keep you updated!