6 months!

Can you believe it has already been 6 months?! Our little Laney Bug turned 6 months old on Friday. She is definitely showing more of her personality these days. For her birthday we got her a highchair. She loves her baby food. prunes, squash, sweet potatoes, and applesauce. mmm She is a very messy eater as you can see. Since we decreased her steroids at her last Dr appointment she has been sleeping through the night!!! yay. This week we make the trip to Stanford for a check up and Laney will get her flu shot and H1N1 vacc.
This weekend we went to Chris and Megan's wedding. Megan is a friend from church and she was absolutely beautiful! Her wedding was intimate and elegant and one of the best I've ever been to. After the wedding Delaney, auntie Jen, Grandma Nancy and I went to celebrate my cousin Courtney's expectant little bundle with a girls night @ Alisha and Tim's home. It was great fun and as always lots of laughs!

The longest day ever!... And MRI results

We made the trip to Stanford Thursday night for Delaney's MRI Friday morning. Oh, what a trip! We left Thurs. night after I got off work and ended up there at about 1am. Then we were up to feed Delaney at 5am and headed off to the hospital. Her MRI went well. A lot quicker this time and she woke up faster too. This picture is of her waking up. And it looks like she's eating, but no don't let her fool you. The nurses found out quickly how sneaky she is when they turned around she would pull off the leads to her heart monitor and stuff them in her mouth! Crazy girl. After she woke up they watched her for about half an hour then we were on our way to see her hematologist at the clinic. At this point Delaney started getting fussy, and still wouldn't eat so they gave her some Tylenol to see of that would help. From there we were on our way home. Delaney cried/coughed/gagged/choked the whole way home! She was in pain from the tube being down her throat when they sedated her for the MRI and she wouldn't swallow or eat. By the time we got home she was congested and panting to breathe and hadn't eaten anything in over 15 hours. We called the hematologist on call at Stanford and she said to take her to the ER. So we loaded back into the car and went to the ER where she was admitted right away. She had a chest x ray, some Motrin, some lidocaine to numb her throat, and a breathing treatment. Finally around midnight she was able to eat a few ounces and fell asleep with her oxygen mask on:) The Dr. said it was probably irritation from the breathing tube, but she sounded better and seemed comfortable so he let us go home around 1am. Longest day ever!
Delaney is doing much better now. She woke up the next morning talking in her raspy voice and ate like normal!
We received the results of Delaney's MRI yesterday evening. The Dr. said her mass has shrunk by 1 cm, which is good news, but it is still very large. She is not sure if it is the medication that is causing it to shrink, or just Delaney growing so we are going to continue to decrease her steroids. The steroids are what cause her huge cheeks and puffy face, and make her retain a lot of fluid. So, we continue to pray her mass will shrink! The MRI of her spine was normal. They were concerned about spina bifida, but there was nothing there. Also, she has been going to physical therapy and it was decided she will not need to wear a helmet. Thank God! If you know Delaney you know 23 hours in a helmet would not be easy.
So in the end it looks like things are headed in the right direction! We appreciate all the prayers and support! Delaney's next appointment is in 1 month.

Changes...

Delaney's MRI has been moved to Oct. 23rd. She is going back to physical therapy on the 19th. She of course does not like it. And most exciting of all... her grammy and paw paw will be here soon! She can't wait.

Ultrasound and Superstitions

Wednesday we made the trip to Children's Hospital Central California for Delaney's ultrasound. This test was to look for spina bifida because of an abnormal crease on her bottom.
The day started out nice with early morning pumpkin spice lattes and an easy 1 1/2 hour drive... nothing compared to our Stanford trips! Garrett and I have decided that we must be some kind of magnet for interesting people. As we were waiting in the packed radiology waiting room a man and woman with a little girl came and sat next to us. After hearing all about the little girls medical problems, the man asked us if we believed in superstitions. I answered "Um no not really", but that didn't seem to stop him. He proceeded to tell me that we all have a light inside of us or an auora and the woman that was with him (we still cant figure out how he was related to the woman) wanted to hold Delaney so that she could take on her sickness and heal her. There was a little bit of a language barrier so I asked answered with a puzzled look, "What?" He went on to explain usually in his culture they used one egg and some herbs, but she wanted to hold the baby to heal her. I quickly looked to Garrett to see if he had some kind of way to get us out of this, but of course he pretended to be looking at something very important across the room and refused to make eye contact. Thanks. So without wanting to hurt the woman's feelings, who was very sweet by the way, I handed her Delaney. She smiled gave her a couple kisses and then Delaney even realized this is too weird and started crying. After more interesting stories from the man, our name was finally called. We hurried to meet the nurse and gave each other a look of relief and of course started laughing.
The ultrasound went well. Delaney was such a good girl! She held still and only cried a couple times. The doctor told us that they she is right at the cut off age limit for being able to detect spina bifida with an ultrasound, so he recommended an MRI for a definitive answer. However, he did say he didn't think he saw anything and she doesn't seem to have any problems with development at this point. So our next big adventures are physical therapy on Monday and in a couple weeks Delaney will have her MRI and we will find out what the next step will be as far as treatment for her liver mass.
Oh, and as we left the hospital Garrett and I were walking out the door as a man dressed like a samurai warrior walked in. Garrett mumbled under his breath, "Bow to your sensei." We are discovering interesting people hang out around children's hospitals.

Stanford Update

Friday was our trip to Stanford for Delaney's follow up appointment with her Hematologist. We were very discouraged by this visit and it came as a bit of a shock since we felt like our little happy screeching baby was doing well.
Delaney had a chest x ray Friday which showed that her heart may be enlarged. The concern is that her little heart is having to work extra hard to pump extra blood to all the blood vessels that make up the mass in her liver. The doctor had a cardiologist look at the xray and he said he did not think it was enough of a change to do anything right now but we were told to be aware of certain symptoms at home that could indicate it getting worse and heart failure.
Delaney is still on her steroids but we had to decrease the dose because she was retaining a lot of fluid and this was causing her blood pressure to be high. At this last visit her blood pressure was back to normal. The mass in her liver does not feel like it is getting any bigger, but she is scheduled for an MRI in 3 weeks to check and make sure. This will also tell us how it is affecting her other organs. If the mass has not gotten smaller and if it doesn't continue to shrink, the doctors are concerned this could put a lot of stress on her heart so they spoke with us about the possibility of starting high dose chemotherapy to help shrink it faster.
And if that wasn't enough... today she had her 4 month visit with her pediatrician. He is concerned about a crease I noticed on the top of her bottom and so we have to have an ultrasound done to see if it is a type of spina bifida. AND ... yes there's more... she also has to be evaluated by a physical therapist because her little head is not symmetrical and he said she may need to be fitted for a special helmet.
SO please continue to pray for little Delaney. I try to believe that God will not give us more than we can handle but it is difficult to watch our innocent little baby go through so much.
This picture is my new favorite. This is the face she makes when she is cooing and trying to talk.

Kangaroo pouch

Today I introduced Delaney to one of the greatest places on earth...Target:) She was such a good girl. But I definitely had to prioritize ahead of time just in case she had a meltdown. I came to the conclusion that if she started to scream I would just grab the toilet paper and super jumbo bottle of hand sanitizer. Those are the necessities:)
This picture is one of the things we found at the baby consignment sale. It was brand new and still in the box! She likes to ride around and look out just like a baby kangaroo:)

New Toy

Oh my little Laney loves her new baby Einstein mat.

Happy 4 month Birthday Delaney!

Today is Delaney's 4th month in this world! Right now she is laying on her baby Einstein mat rolling over from her tummy to her back and then grunting because she can't quite make it back to her tummy yet. We decided this morning we would go to church with little Laney Bug. We figured since she did so well last time we would give it another try. After about 10 minutes she arched her back and let out a squeal that meant Mommy would be making a quick exit and pacing with baby in the foyer during church today. And of course church ended with a screaming meltdown. But as soon as she saw her Daddy the tears stopped. She is such a Daddy's girl!
After church we enjoyed some juicy burgers for Grandpa Paul's Birthday. He got a GPS thingy. (sorry I don't know about those gadgets) And then watched some golf and Garrett's beloved Seahawks.
Tonight is bath night. That means lots of smiles from Delaney and her chubby legs going a mile a minute!

Garrett and I decided to start this blog to keep all our family and friends updated! Since you are all scattered around the country we thought this would be an easy way to keep in touch. Of course most of what we post will be updates about our precious little Delaney Rae. Tomorrow is her 4 month birthday! I cant believe it. She is changing so much. She looks like a baby now and not a little newborn. Well, we are all off to bed Garrett and I went to a baby consignment sale today ( I needed my mother-in-law to help me find treasures) and are wiped out. I've never seen so many pregnant women use their bellies to push their way through crowds and Moms nursing their baby's while digging through bins of clothes... that's talent. We will update and add pictures soon.