A Few More Pictures

"Hey I look like Grandpa!" This is how he wears his pants.

Requested Pictures

Someone has put in a request for Cayman pictures. I did not realize it had been awhile since I've posted any pictures!! So here's some from this week.

I'm having some trouble with blogger, so check back later and maybe there will be some more pictures.

Sleep Tight

Saturday May 31, 2008

Cayman slept through the night for the first!!! I had 6 hours straight sleep! I sure hope this is going to be a regular thing, but I'm not going to hold my breath. I've been trying to wake up in the early morning with Cayman and stay up no matter how much sleep I've not gotten. It's been tough but hopefully this is helping her get on a schedule. So during the day I play with her, we listen to children song CD's, watch baby Einstein, read books, bathe her, etc. When she takes one of her afternoon naps I'll try to get one in myself. Trying to do this schedule hasn't been easy because there's time I run on just 2 hours of sleep. But I realize trying to catch up on sleep for myself during the day hours is only encouraging Cayman to continue in her night owl schedule. A little sacrifice now can go a long ways later. So that's what we've been working on and I think we're maybe getting somewhere with it. Grandma Sue's been a big help. There were times she'd watch Cayman in the evening and I would sneak another nap in for myself.

Cayman's head has continuously, slowly decreased in size each day. I am not sure what her head measures today yet. By appearance, I think her head looks slightly bigger today. She was too wiggly to get an accurate measurment though. I thought I would wait later in the morning or day to measure again before I panic.

Going Home

The Neurosurgeon definitely knows everything is not functioning properly with Cayman's shunt. It's been on the lowest setting (0.5) for 2 days now. While we have seen a slight change in her head size (it's now 46 cm) it has not drained drastically like it should on this setting. Since the shunt is not completely plugged the doctor wants to wait on surgically fixing it. He feels safe on waiting because the pressure on her brain has decreased and she's back to her normal self. It's possible that this problem could clear up on its own without surgery and the doctor feels it's worth waiting to see which direction it's going to go. We like that Dr. Maher is not so quick to put Cayman under the knife as that seems to be a typical characteristic of a surgeon. If he can spare Cayman of another surgery he will. He's confident that there is no serious threat to her brain health by waiting since her head pressure has decreased. So we're going home and hopefully not to return until our regular scheduled visit with the doctor next week. We will be phoning in to let the doctor know what we are seeing with Cayman's head whether it's: better, same, or worse. So we'll be doing lots of head circumference measuring over the next few days. If we see the number increasing we'll come back to the hospital right away and it will be Shunt Revision #2 for her.

It was fun to stay at the Ronald McDonald house and have Cayman with us. It was kind of like a little vacation getaway...even though it's not exactly the same as a vacation. Actually it's not like a vacation at all!! It's been a very stressful 2 days constantly wondering, worrying, and waiting. Never mind that idea!!!

Story Time:
At the Ronald McDonald house there are several refrigerators in the kitchen. Every 5 rooms share a fridge. We mark our room number on our food. Mike bought a gallon of milk and cereal for breakfast while we stayed there. After the first day we noticed the milk carton was lower than when we left it. Someone was stealing our milk. So Mike took out the pen and marked "Breast milk" all over the carton. That was enough to scare off our milk thief.

Good News....Bad News

Good News: Cayman is not having surgery today. Her shunt seems to be working. Bad News: It could be partially blocked which could still lead to another shunt revision.

Cayman had a terrible evening yesterday and through the night. She just looked miserable. At 4 a.m. her head was worse. Her soft spot was bulging more and the fluid around her shunt had increased. When we woke up at 7 a.m. the extra fluid around her shunt was gone and her soft spot bulge had gone down some!! This morning her head size had decreased slightly (46.5 cm).

We are so thrilled that our Cayman did not need surgery today! The Neurosurgeon is keeping a close eye on it. He wants to watch for signs of the shunt failing or over drainage if the shunt is completely working. So we're staying another night at the Ronald McDonald house and we'll see him in the morning again.

Cayman is back to her normal self. She's been smiling, "talking", and eating better. Mommy and Daddy are ready for nap time now!!

???Shunt Failure???

Cayman's shunt functionality is not looking good. The Neurosurgeon dialed the valve down to the lowest setting. If the shunt is working this should start to drain the fluid quickly...quickly means seeing a difference within 24 hours. It's been 7 hours so far and there is no positive signs yet that the shunt is working. Cayman has been so sad...crying a lot. She keeps rubbing her eyes with the back of her hand. This is probably because of the extra pressure she feels in her head. So this is the doctor's plan: He changed the shunt setting and we go back to see him tomorrow morning. If there is no signs that the shunt is working then it will be Shunt Revision #2 for her :o(.

A room at the Ronald McDonald house opened up just today so we gratefully slipped into that vacant spot. Cayman is with us. It's nice that the doctor did not admit her to the hospital. Even if Mike and I are up with her every hour we are much more content having her with us.

At this point I've already accepted it that it appears her shunt has failed again! So I'm just ready to get the revision done and over with, and my baby can start to feel good again! Her head is already measuring 47 cm! Her soft spot is bulging, she is very irritable, not eating well, puffiness around the shunt valve, and sleeping a lot. All the same signs she had last time when the shunt failed. Her Neurosurgeon is a very caring man. His thoughts are that the shunt is plugged again but he wants to hold off taking her to surgery just in case it's not plugged and changing the shunt setting works. *sigh* So once again we're back here playing the waiting game and let me tell ya...IT SUCKS!!!

More Outings

On Sunday we went to the nearby Lake for the annual family get together on Grandma Sue's side. This was the first for Cayman to meet these relatives. It was a bit breazy so we kept her wrapped in a blanket with it up around her face to fully protect her and she did not like that so I wasn't able to stay real long with her. But everyone thought she was sweet.

Daddy left for work from the Lake, and Cayman and I went to Grandma Cindy's house. Cayman made another friend, Carla. She came over to meet our little angel. Carla is a good friend of my family's. She was also Mike's day care teacher when he was little. Boy, does she have the stories to tell about Mike! He was much like Denise the Menice when he was a little kid.

I noticed on Saturday Cayman's head looked like it was changing a bit. Then on Sunday it looked bigger. I measured it and found that it was up to 46 cm!! I kept her propped up all night long to help encourage the drainage, but I see this morning it doesn't look any different. She's been extra fussy too and not eating well. All this has me worried that her shunt has failed again. We see the Neurosurgeon on Tuesday. Hopefully we'll find out what's going on.

Tummy Aches...and Smiles

Poor Cayman has not been feeling well. On Wednesday Mike and I left her with Grandma Cindy for most of the day while we went apartment shopping. Cayman did great...much better than Mommy and Daddy. We missed her so much!! When we returned, she was happy, had slept and eaten well the whole day. Then last night around 2 a.m. poor thing fussed off and on til 10 in the morning!! We were suppose to take her to Ann Arbor on Thursday but we canceled her appointments. We figured it was best to just keep her at home. Her head is looking good and has been stable since her last shunt setting adjustment so I felt confident that her checkup could wait until next week. Her other appointment was with Physical Therapy. Her stuffy nose is back and the last time she had that she acted like this. Daddy was up with her from 2 a.m. til 6 a.m. I got up to give Daddy a break.

I had read an article long before I was pregnant that has always stuck with me. It told what to do when your baby is crying and nothing seems to soothe them. It said: Often a baby's cry makes a person nervous. One needs to understand that a cry is the only way a baby can communicate their discomfort. We would verbalize it to each other and even show crabbiness ourselves in our tone and words when we do not feel well. Focus on listening to your baby talk about their discomfort to you instead of trying to get them to stop crying. Do this by snuggling them, even looking into their eyes, and with a soft understanding voice reaffirm their feelings, "I know it hurts, honey. Tell Mama all about it."

I sat in the chair to rock and snuggle Cayman. While I talked to Cayman she would smile in between her cries. She's such an amazing little baby!! Here she is not feeling well, and yet she is still so happy. I'm so proud of my little girl and who she has shown herself to be.

Making More Friends

Cayman made more friends. The Bible Study Aunt Stacey and Uncle Dan attend came over tonight to meet Cayman. They have been faithfully praying for Cayman for a long time!

Starting at the top (left to right): Uncle Dan, Greg, Tracey, Jennifer, Cayman, and Aunt Stacey

Cayman's Many Faces

"OK, that's enough Mom, now feed me!!!"

Cayman's Social Weekend

Cayman was building her social life over the weekend. It was a fun, active weekend for us. We were able to have a weekend like this because Mike did not work Saturday night. He had to work Wednesday night instead.

Saturday May 17, 2008

Mike's immediate family met at their favorite restaurant for supper. It was fun taking Cayman here for her first time. I remember we were all together at this same restaurant when we told Mike's family that we were pregnant.

After supper we went to the church where Mike's brother and sister-in-law attend. There was a special service featuring the Hughes family. They were on the Extreme Makeover Home Edition show this past February. You can catch the full episode here. This family's story is truly inspiring. Their oldest son, Patrick Henry (now 19 years old) was born with multiple anomalies. He is blind and does not have the ability to extend his arms or legs. But none of this has stopped him from becoming an amazing musician. His words are "God made me blind and unable to walk, big deal...I'm not disabled. I'm very much enabled." He had an interesting perspective on blindness. He sees it as a blessing. His thoughts were "People that have sight have to get over the hurdle of judging others by their appearance. I don't have that struggle. I get to see people for who they truly are." A question was directed towards the dad. It was asked "What has it been like sacrificing yourself for Patrick Henry?" I was so deeply touched by this dad's response. He said, "I don't see where I have sacrificed myself at all. I'm just being a dad. I took a job working nights to be home with my family and that has been a blessing, not a sacrifice."

Cayman slept through the whole service. The music was really loud too. At home things are mostly quiet so we weren't certain how she would handle it. The noise put her to sleep. She would wake up whenever it got quiet.

Sunday May 18, 2008

We finally made it to our Sunday morning church!! As soon as we entered the doors, it was beautiful the multitude of love that Cayman received! So many were so excited to finally meet her. Our pastor called us up front. Daddy was put on the spot of recalling all the baby facts: birth, weight, length, etc :o). And of course he had to sneak in his bit about the football rivalry. He said, "Cayman was born at U of M hospital. They have a much better hospital than they do football team."

When we finally made it to the van after the service, I started laughing and crying. I think Mike was questioning my sanity when he asked what I was thinking about. I told him, "Do you remember, before Cayman was born, I feared that she would be ignored and unaccepted because she was born different? Wow, today sure puts that fear to silence!"

Our church family has been absolutely wonderful to us. They have supported us with prayers, gifts, food, money, cards, etc. A lot of this feels less scary knowing we are not alone.

Angela & Cayman Wearing Their Shirts

My beautiful cousin Angela ordered herself a Cayman T-shirt. In case you missed the story about this gorgeous design you can read about it here. To order a Cayman shirt email Jim Miller at jim@ryanwallaceshow.com.

So Long, Farewell House

We accepted an offer on our house today!! We close in a month. So the plan is to shop for an apartment or house to rent over the next month. If we find one that fits our needs and budget then we'll get it but if we don't, my in laws have welcomed us to continue staying with them as long as we need...especially if Cayman is staying. Grandma Sue is going to miss her so much when we move! We've been waiting for our house to sell since December. Now that it has it's bitter sweet. Getting rid of the mortgage feels great, but we also loved our house. We did not have it for very long but we have a build up of memories there. It was our first real place together. The neighbors are wonderful! The absolute best! We miss them a lot! Plus this house was 2 miles from the beach! The train station going into Chicago was only a mile away. There were so many great things about living there. But our families weren't there. That is why we left this awesome place behind! It's crazy as I think about all the changes we have survived over the last year: pregnant, Cayman's scary diagnosis, accepting a job offer out of state, putting the house up for sale, giving our cat away, moving in with my in-laws, and Cayman's birth. I don't resist change but I am definitely not one that embraces it with poise. It takes me awhile to adjust. In my husbands words, "She freaks out until she sees everything is OK." I'm surviving much more than I thought I ever would...and not just surviving but enjoying life too. It sure helps when you have great people in your life. I love my mom so much! I think she is the smartest, strongest woman I have ever met. She's been such a support and help to me. And Mike...if every husband was like him there would be a lot less divorces. I have loved getting to know my mother-in-law while living at their place. Mike's parents have done so much for us. They are great cooks so we have eaten well. They have let us haul our junk in and Cayman's stuff alone has taken over the place, and they don't complain. Even though moving in the middle of my pregnancy was stressful, it was the perfect decision. And Mike's job has been such a blessing to us. It may seem like crazy hours but that's why it works so well for us. Mike has been able to make it to almost all of the doctor appointments because he has the week days off. He is home a lot more with this job than he was when we lived in Indiana. As I look back on all of the craziness these changes brought to us, I see that God knew what He was doing all along.

"Good-bye House. We're going to miss you!!"

A Little Bit of Everything

I slept 6 hours straight last night! I can't give that credit to Cayman though, as she still prefers the night owl schedule. Mike got up with Cayman and let me sleep. The only bad part about sleeping so long is the discomfort I have from skipping a pumping. I don't think Cayman will ever nurse. My lactation consultant said that it may be difficult for her to be comfortable because of her large head. And truthfully, I am at ease being able to measure and know the exact amount she is eating. All the doctors watch her weight so closely, and even though nursing would free me up in some ways, in others it would only add more stress. So for now I'm just plugging away at it, feeling like I have 2 feeding times at each session, and reminding myself I will not be pumping the rest of my life.

Cayman went to the Pediatrician yesterday. She's had diarrhea and a very sore, red bottom. The doctor said it was from the antibiotic she was on while in the hospital for her shunt revision. Antibiotics destroys the good bacteria that every person should have in their body. The doctor said not to worry about it and that her body would eventually work out the good vs bad bacteria balance. I never sit easy with just waiting and doing nothing. I always will search for something that can help. That's the main reason for my love for Google. That is how I learned about Stem Cell Therapy that we had done for Cayman at Duke University. Speaking of Duke, the blood results from her genetic test is back. I wrote about this in an earlier post. It was an inaccurate testing because they couldn't draw enough blood from her tiny veins. So this means we have to do it again :o(. I don't know when this will get accomplished. I just hate thinking about it. We meet with the U of M geneticist in June, so we'll discuss it with them. Maybe by then she'll be bigger and it won't be as big of a challenge to draw her blood. OK, getting back to Cayman's diarrhea, diaper rash, and the doctor saying it'll work itself out in time. She's had diarrhea for about a week now and I've been worried that her body might not be absorbing the nutrients it needs for her brain and the rest of her body to grow and it may bring up new health issues for her right now. My intense love for searching out all options has led me to the field of Homeopathic. I have a wonderful Naturopathist that we have taken Cayman to. I enjoy the approach of homeopathic field more than the medical side of things. Homeopathic will treat to prevent where as the medical often treats once the issue is already present. You don't go to the doctor when you're well do you? Sometimes, but often that is to check if you are already "sick" and you don't even know it. A Homeopathic doctor's approach is to prevent you from getting sick. They treat the cellular deficiencies which makes the symptoms disappear because it's resolving the problems at the root. The medical field treats symptoms and often misses the deeper reason why they're there in the first place. Our Naturopathist has this amazing machine called the Body Scan. It's an absolutely painless procedure. Don't talk to Cayman though, she'll tell you it is terrible. It reminds me of those arthritic braces people wear on their wrists and you sit there for 20 minutes while this machine can read everything that is going on in your body...even emotionally, and you can't feel a thing. Don't ask me how it can but it works. For a baby, they put this brace on the leg because their arms are so tiny. Cayman hated it. Her leg is so tiny and even the smallest brace is so big that it wasn't even close to tight. She just fussed. I couldn't believe at how wimpy she was over something so simple especially after showing so much tolerance for larger procedures in the hospital. She's so cute! So again, back to Cayman's diarrhea, rash, and nothing we can do about it. I called my Naturopathist and he told me to get Acidophilus at a Health Food Store. They had one special for children called Primadophilus. It is a probiotic that contains the healthy bacteria. It's in a powder form so I just put the recommended dose into her milk bottle. With just one dose, and within 24 hours I have already noticed a change. Her bottom is less red and her stool is becoming more solid. It's not solid yet. It's still a little liquidity, but before it was so runny her diaper soaked it up as if it was urine and I couldn't even tell she pooped. Now I can. I wonder when Cayman is older and she reads all my postings, what she will think about me writing almost a whole post about her poop. :o) So anyways she's doing better and I'm glad for that. Her head is too. The shunt adjustment that was made last week has worked. Once in awhile her head starts to sink more, then we just keep her laying flat all day and it slows up the drainage enough to bring it back up. Because her shunt is working well for her we have not gone to Ann Arbor this week. I know the weeks not over yet but so far it all looks well.

I've had people asking about Cayman's Benefit Dinner that I briefly mentioned in an earlier post. There isn't an exact date set for it yet. Possibly in June. Once the planning committee for it knows more and relays it to me I'll be sure to post and let everyone know. Thank you for caring and wondering about it! We are so touched by the endless way people are supporting us.

I've also had people wondering about my 1st Mother's Day. Well I had the house mostly to myself because I was too tired to haul Cayman and myself out to join Mike's family at a local Mexican restaurant and Mike was working. I got two loads of laundry done and washed her bottles that I had been putting off. Before you think my day did not sound all that special, let me share with you this face:


I got to stare at this face all day long!! And she was full of smiles for me. I laid her down on a blanket in the living room while I switched my laundry over. She started making all sorts of fussy noises. I ran into the room to check on her and as soon as I got there she gave me a big smile. I loved my Mother's Day.

I also finished a hat for Cayman. It's kind of goofy but that's what makes it so cute. It makes me laugh. Thank you, my readers, for sending me so many blog comments and emails. I really love the support I have from you. Do you realize this journey feels more manageable because of all of you? I love checking my email and seeing my inbox full! Your words filled with encouragement, love, and kindness really helps carry us through. We feel like we are not alone in this journey of ours. Many of you are traveling daily with us by checking in on Cayman. I wish I could thank each one of you personally. Many of you I have never met but I have gotten to know through this blog and you are now forever apart of our home. Thank you for reaching out. It's made a difference.

To Be Real

I started this blog so that I could record my thoughts on this journey of ours. And my goal has been to be real the whole way.

Somewhere along this journey I have believed the lie that I am suppose to be so strong all the time. Because I willingly chose motherhood I should be happy with every part of it! I realize we often do not get to choose the way life turns out for us. We just manage what comes our way. I do think with time there will be parts of all this that will get better. I look forward to when my heart is more at peace not having answers to all my "why's". I am the kind of person that likes to understand exactly why things happen. I cope with things better if I can google them. When Cayman was diagnosed prenatally with so many anomalies I googled each one and tried to find a cross reference that could sum up an answer to why all these malformations took place in her. I haven't been able to find anything, nor the doctors or the genetists. I've had my share of shouting matches with God. My heart is not to anger and rebel from Him but to seek and find Him in this. I do not understand His heart in all of this. God's nature and love is good. I do know that. It's what draws me in and keeps me there even when He doesn't make sense to me.

I find myself often saying to Cayman in my mind "I'm sorry little Sweetheart. Mommy didn't know how to do it differently. I'm sorry I couldn't give you a better start. I'm sorry you have to know pain like you have."

I don't like it when people say "But Cayman will grow up not knowing anything different." But that doesn't mean she won't hurt nor at times wish it could be different for her or question why does she have to go through this when another child doesn't. My prayer is that I will know how to be there for her and know what to say. I was watching Forest Gump the other night. Always before I saw this as a goofy humerous movie, but this time I perceieved it a little differently. I liked it when Forest said, "Mama always had a way of explaining things so I could understand them." That is what I hope I can do for Cayman.

I am always so curious when I find someone that has had other kids after having a child born with serious birth defects. What went through their mind during those other pregnancies? Did they plan to be pregnant again? I am so afraid to be pregnant again yet my desire for it won't go away. My mind will forever know the reality of what most women ONLY fear and NOT experience during their pregnancies. Before 20 weeks gestation I lived the normal fears...I hope it's a healthy baby, I hope I have a normal childbirth, etc. Then after 20 weeks gestation I lived the reality of those fears. Most literature printed on pregnancy fears says to the expectant mother: "most of your worries are unfounded -- and what you fear most will likely never come to pass. " Do you know how silly those words seem to me?!

I want to know what it is to have a normal pregnancy. I want to know what it's like to be pregnant and shop for my baby and not wonder if she'll even live to wear the clothes I bought her. I want the excitement of going into an ultrasound without any bad news reported. I want to know what it's like to have more tears of joy than of sadness during pregnancy. I want to know what it's like to have my baby in my hospital room with me after she's born. I want to know what it's like to hear my baby's first cries.

That was my dream and I want the chance to have that experience but it's forever changed for me. I don't know how I could be pregnant again and not feel that I am experiencing it all over again because the worries are so much more real. I know that it wouldn't be easier if it was my 2nd or 3rd, etc, but I feel I have lost hope of future biological kids. The whole pregnancy was so different than what I dreamed of. I didn't know it would take us so long to get pregnant, I didn't know I would experience a high risk pregnancy, I didn't know I would have to be put to sleep and miss the birth of my baby.

I am so glad God did not take her from me. I thank Him for each day I have with her. She is so precious.

Obviously I am still trying to process what God has brought to me. I think Cayman is going to teach me things about God and myself I never knew.

2 month old pictures

Celebrity Moms

On TV I caught a preview of those celebrity red carpet interviews. The main "theme" or topic was showing all the celebrities that just had a baby and they asked them how they were doing. Several said, "I feel great! I've never felt better!" I thought to myself, "Oh sure, that's because you can afford to hire someone to do all the hard work of being a mom." I'd feel great too if someone else did all the washing, laundry, cleaning, cooking, etc. while I just loved on my baby and the rest of the time I was at the gym with my personal trainer (which is located in my own house of course...I know how it goes. I've watched "Cribs"), eating healthy food rich in flavor, and then relax in my hot tub. I love being a mom but this is a lot of work! And I can honestly say I don't feel great most days! Cayman doesn't sleep hardly more than 2 hours at a time any time of the day or night...unless she's being cuddled, then she'll go longer. We've tried swaddling her and that doesn't seem to make any difference. I hear these stories of how some babies are sleeping through the night at 2 months old. We'll just keep working at it.

All my blog readers that are Mom's...I'm curious, when did your babies start to sleep through the night?

The Ronald McDonald House

Both times Cayman has been in the hospital we have stayed at the Ronald McDonald house. This place is such a blessing. It cost just $10 a night.

There are 29 bedrooms containing two twin beds. Rollaway beds and cribs are available for additional family members. Every two bedrooms share a bathroom.

Mike and I did not keep the I Love Lucy sleeping arrangement.

There's a game room with a pool table, ping pong table, couple couches, and a big widescreen TV.

There is also 2 family rooms: one on the lower level and one on the main level. The family room downstairs (left) has a large sectional couch, a TV, games and puzzles. The family room on the main level (right) has two computers, a piano, 2 couches, and a TV.

There is a community laundry room. The house even supplies the detergent, bleach, and dryer sheets.

In the kitchen there is 5 stations that include their own sink, stove, and refrigerator. There's 3 dishwashers, and 2 microwaves. The set up reminds me of Home Ec class in high school. The kitchen is stocked with dishes and cooking equipment. Each family has their own cupboard space to store their own pantry food. Every 5 rooms share a refrigerator. The kitchen also has a very large walk in pantry stocked with lots of food that people donate to the house for anyone staying there to eat. Various groups of people volunteer their time to come in and cook supper every evening. Most of the time it is a church or U of M college students. Leftovers from these meals go into a community refrigerator for anyone to eat later.

The dining room is directly off the kitchen and next to the atrium that contains live plants with lots of sunshine coming through the skylights. There is a pop machine that only cost 25 cents per can. The kitchen and dining room is the only place where you can have food and drinks. Only water is allowed in the bedrooms. This keeps the rooms clean since the house doesn't have maid service. Each family is responsible for keeping their bedroom and bathroom clean. Everyone that stays there shares the house chores. There's a list on the office door that has assigned each room to a different chore each day. Examples of some of the chores are: empty trashes in all the public areas, cleaning the public bathroom, sweep & mop kitchen floor, load & empty dishwashers, vacuum hallways, etc. There is also a large play room filled with toys.


Staying at the Ronald McDonald House has saved us a lot of money! The first time Cayman was in the hospital we stayed there 14 days, so our total bill was only $140. If we would have stayed at a hotel costing $70 a night our bill for those 14 days would have been $980. You can see how big of a savings this was!! Plus, adding the food that is donated and prepared for us at the House is even more of a savings! These Ronald McDonald Houses are awesome. Because people donate to them they are able to help people like Mike and I. About 80% of the funds necessary to operate these amazing Houses come from generous donations. So if you get a chance to donate food, money, or volunteer to cook a meal for a Ronald McDonald House please do. Go here to read the Ann Arbor House's Wish List on items they need. Or donate to a McDonald House that is closer to you. It really does make a difference.

diapers.com

has decent prices I have discovered for diapers and wipes. It seems to be comparable to the wholesale stores like Sam's Club or Costco. Orders of $50 or more are shipped free. I like the fact that my order comes right to the house instead of trying to find the time and energy to get out to the store to buy diapers. Diapers.com has a Refer-A-Friend Program. So if you order from daipers.com and put in my Referal Code (which is KRST9154) or my email address (kris_lmt@yahoo.com) you get $5 off your first order and I receive $1 credit! Sweet!!!! So if you're thinking about ordering from there, please enter my code:

KRST9154

or email address:

kris_lmt@yahoo.com

and we'll both save!

Check it out at Diapers.com

Or if you know of another place to get even a better deal on diapers and wipes let me know!

Thanks!!

Shunt Adjusted

We did go to Ann Arbor today. Cayman had her shunt adjusted. It's at the highest setting now. There's no other setting above this one that can slow up her head drainage. *Fingers crossed* I hope it works!

Cute story time:
On our way up to Ann Arbor Cayman was hungry and crying. I had the bottle heating up in the travel warmer but ya know babies aren't born with patience so she was screaming. In between cries she sucked on her fingers. I always vent her (hook up the chimney to her G-tube) whenever I feed her in the vehicle so she can burp without us having to stop and take her out of the car seat. I looked over at her and she had ahold of that tube hanging in front of her and she had pulled it into her mouth sucking on it. It was the cutest thing!! It made Daddy and I so happy for the fact that she saw something there and knew to pull it to her mouth in hopes it would be food showed intellectual thinking. When you are told your child's development is uncertain, you find yourself celebrating even the smallest of things!!

A Poem

Ok, so my friend and hairdressor Jessie told me she loves it when I blog and blog often. So that's my main reason for so many posts in such a short time! :o) Just for you Jessie...so you better read it all now ...hehe

My beautiful blogging friend Kacey posted this poem on her site and wanted to be sure I read it! She thought it would provide the encouragement I had spoken I need in my earlier post. And it did! Thank you Kacey!!

I thought this poem was special and touching that it needed to be on my blog too!

A Special Child
by Sharon Harris

You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all- "Real Love

It takes me back to when I was pregnant. I went through a shallow phase where I felt more deserving than Britney Spears to be a mom and God gave her 2 kids born without any complications. My mother-in-law said something to me that I better understand now than I did then. She said "How much better care and love a child like Cayman will get with you and Mike. With Brittany how little of a chance in life they would have." Those might have not been her exact words, but it was something like that. I use to feel like I was being robbed of motherhood because I would have a special needs child. I feel so differently now! There was so much I did not understand. The way I see it is, I was not given just a regular baby...I was given a shooting star that stands out among the thousands.

Cayman's Cry

Cayman cried at birth but then didn't again until she was about 5 or 6 weeks old. She had the breathing tube in for 10 days in the NICU so we wondered if that had something to do with it. Now she cries again, but usually it's only when she's hungry. It's so darn cute. We all find ourselves laughing when she cries because we waited so long to hear her "voice". Now that she has found it again it's just so cute!!

To Grandmother's House We Go

We went to my grandma's house today to visit her and my Great Aunt Betty. Lots of other family came over too!

• Uncle Martin & Aunt Linda
• Uncle Paul
• Cousins-Ben & Laura
• my brother-Uncle Tyson

Of course Cayman was the center of attention...lots of cuddles and awwww's. My Uncle Paul came by with his camera and took pictures of Cayman. I tried to make Cayman an appointment for her 2 month old pictures (which is tomorrow) with a photo studio but they were booked solid for a week because of Mother's Day!! My Uncle Paul takes great pictures so I was excited to hear he was coming by. He set up a little backdrop using Cayman's blanket and he took a few pictures for us. Check back soon for her 2 month old pictures!

Great Grandma finally got to hold Cayman! She's been waiting a long time for this! When she came to the hospital to visit Cayman in the NICU you could tell Grandma wanted to hold and snuggle her so badly.

Great Aunt Betty got her snuggles in too! It was so precious to see the two of them together. Aunt Betty's heart is failing and when she heard I was pregnant last summer she thought she would not get the chance to meet my baby. Cayman's due date fell on Aunt Betty's birthday. Of course that is not the day Cayman was born, but it's still special to me.

On our way to Grandma's house we needed to stop in at Sam's Club first. It's a little under an hour and a half drive to her house so we were trying to be quick so we could get back on the road. I had forgotten to put Cayman's hat on before entering the store. Truthfully I did not even realize until I saw a lady look at Cayman and shock came over her face. That part did not bother me because really this is not something a person comes across regularly so I can understand Cayman's head can be startling at first. I smiled at the lady in hopes to communicate a non-verbal "It's Ok" and make her feel comfortable with Cayman. But she quickly turned away without showing any change of attitude. That hurt. I'm such a proud Mama and want to show my baby off just as she is. I'm sure that woman did not know how to handle the situation and perhaps I embarrassed her when I acknowledged her. I would have liked it if the women would have smiled back and even asked questions about Cayman. We welcome questions. Questions lead to answers...answers lead to breaking the ice...and breaking the ice leads to a connection. My main message I want to make today is:

We welcome questions
We do not welcome pity