Monday, February 28, 2011

Cleansing my soul

Some things clean my soul, and this is one of them (you may want a kleenex ready):

final hours

Bringing home Olga

When I read the following post taken from Patti's blog all I could think about is the fright children must feel when being transfered from an orphanage to an institution. It is a literal nightmare. What scared you as a child? Loosing your parents? Storms? Bugs? Animals? Death? Abandonment? You name it and this tops the cake.

Patti has worked very hard to help Olga. Patti is still working hard and the least I can do is pass this along. The least I can do is donate $10.00.

Olga has a family committed to her but they are still in need of funds to get her from there to here. If you can help spread the word and even donate towards the cause, it would be greatly appreciated. Read on...
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Dear friends,

So many of you already know this beautiful little face....

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Olga turned five last month. She has spent the last five years in an orphanage in Eastern Europe, without the love of a mommy and daddy- simply because she arrived in life exactly as God designed her. One chromosome too many, and her fate was sealed from birth.


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Sealed, because in Eastern Europe, babies who are born with Down syndrome are deemed unacceptable at birth. They are discarded as cast-offs of society, and when they turn five they leave the only home they've ever known...


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And I wish I could say that for most of these children, leaving that home means going to a place of safety, a place of happiness, a place where they would finally know the love of a family...know what it means to be cuddled or sung to or read to, tucked in at night, prayed for, loved.

Instead, they are taken to a place that most people wouldn't leave their family pet.


A place of living hell, where they will never know the tenderness of a parent, never know the security of being raised in a family, and there they will stay, one ugly, pain-filled day at a time...until they die.



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I read a post last December that stayed with me to this day. It was called from baby dolls to bedstraps.

The blog author wrote about Elizabeth, an orphan on Reece's Rainbow who had been transferred to a mental institution, waiting for a family to step forward for her. Her words still haunt me.

I wonder where she thought she was going as they led her out of the orphanage that day. Did she think that maybe it was finally her turn? That they were taking her to her forever Mommy and Daddy?

And when they instead took her inside that dreadful place, when they shaved her head and tied her to a too-small metal crib

when they turned their backs and

walked

away…



when they left her confused, terrified,

in a room where the wails of schizophrenic adults echo through the cold air

what was going through her young mind?



Did she wonder if she was being punished?



How long did she hold out hope that this was only temporary?

That any minute, they would come and take her back to the baby house

to her baby dolls and teddy bear,

to her best friend, Angelina?


Did she long to free her arms from the restraints

to cover her head with her hands to drown out

the scary noises

the scary sights

the scary smells?



That could be my Lily….


It could be your child.

And what if it were?

What if you woke up one morning

and by some hellish, twilight-zone twist of fate

your child wasn’t still tucked into that warm bed down the hall,

what if your child was trapped

across the dark sea

in that nightmare that is

the institution?

What

would

you

DO?

Rescue those being led away to death; hold back those staggering toward slaughter. Proverbs 24:11

Elizabeth is being rescued today, thanks to the efforts of that blogging mama, and others like her.

Olga is being rescued today, thanks to so many of you...you gave so much and created such a large grant that a family was able to step forward and start the process of adoption.

The Abells have done so much already, towards rescuing Olga. I can't even imagine all the paperwork and prayer and emotion and finances that goes into an international adoption. They have done numerous fundraisers, and will continue to do so until they can bring Olga home.

Through the help of so many, a grant of over $13,000 has been raised for Olga's adoption. That grant is set aside for the final travel costs and fees that it will take to bring Olga home. It will take every penny of that and then some.

Right now the Abells are in need of raising the $7,000 that is needed to submit their dossier for Olga. Without that dossier we don't even know if Olga has been transferred yet. Here in America you just pick up the phone and ask these questions. But here in America we don't tie five year old girls to cribs to keep them from climbing out.

The Abells need to submit that dossier as soon as possible- at the very least to find out if she has been transferred already- because I know an army of prayer warriors who is going to want to know that piece of information as well. And at the very most, it could be able to hold Olga at the baby house until the Abells can rescue her. I wish I could say with certainty that she won't be transferred- truthfully we just don't know that.

Olga has been so heavy on my heart for months- friends, I want you to know that I DO trust that God has a plan here.

I prayed like crazy for a way to help the Abells. I truly believe that there is a network of people who love Olga here in blogland...a net that is woven by God and is stretching out across this blessed country we live in, and even beyond to generous hearts in other nations. I really cannot express enough how thankful I am to be a small part of what God has already done for Olga, Peter and Kareen. But I don't think our job is done.

Olga needs us.

I don't want her to spend one more forsaken day in that place than she has to.

We're not doing a giveaway here today. I don't even think we need to do one- I know so many just have a heart to help and to give, and prizes were never the real reason we all gave anyway.

So I'm just asking- for one day- for you to do whatever you could to help Olga. Whether that's $10 or $20 or even a hundred...if you are able to help raise this money for the dossier, please do so HERE... This is the Abell's chip-in.




This is the link for the Family Sponsorship Page on Reece's Rainbow...every single dollar goes to the Abell's adoption fund, and every single dollar will help.

We're calling this A Day to Save Olga, because there are about 17 of us blogging mamas and one blogging grandpa who have set aside this day to blog, post on Facebook, pray, give and spread the word to SAVE OLGA.

Will you help us?

I know you will:)

Love,

Patti

Fresh babies

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Saturday, February 26, 2011

Down Syndrome Achieves (DSA)

I have been thinking more and more about how I can evolve from a mother who learned her unborn child had Down syndrome to a mother who has a child with Down syndrome. What does that mean??!! It means I have accepted it, now I want to move forward. I want to get involved. I want to learn about current research surrounding Ds. I want to help move research forward. I want to support legislature that will help move research forward.

I have been praying for direction and I think I found it on Lisa's (Living in the Light) blog post. I think I have found a start in Down Syndrome Achieves. Lisa did a wonderful job introducing DSA.

I have often thought about research surrounding Down syndrome. The simple fact of the matter is I do not know enough and I owe it to my son to learn and be his advocate. He needs a voice. I am not interested in changing him. I am interested in supporting his health, his intellect, his potential. In order for that to happen, there needs to be a lot (A LOT!) more research conducted. There needs to be funding and in order for either to happen this needs to be a priority. Consider supporting Down Syndrome Achieves.

I will be highlighting some other research organizations in future posts. I hope to learn a lot on this journey...and become a contributing member of each.

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to get started:
visit Down Syndrome Achieves
visit Lisa's blog post

Consider supporting Calvin and the more than 300,000 people in the US who have Down syndrome.

Thursday, February 24, 2011

7 months and...

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I love babies playing with feet. Calvin started doing this just a few weeks ago, around the time he started rolling over. He rolls a lot, but just one way, which is a whole 'nother post...
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Nolan was a kid who really liked a pacifier. He finds Calvin's once in awhile (Calvin does not really take it but we have one on standby). When Nolan gets it, he is a whole different kid. He is quiet and lays still! I admit I let him have it for a while when he finds it. "He is only 2.5" I tell myself. He is so sweet and might actually need the stimulation. When I tell him he needs to put it in the sink he walks right over and discards it. Then I hide it until the next time.

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Yep, Evan's shirt is on backwards. Yep, he always wants to wear a Packer jersey these days, replacing his past favorite MarioKart shirt.PhotobucketCalvie's bitty head shadow, I tried getting his profile but the sun and clouds were wrestling Evan/Nolan style.

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these 2 are buds

7 months and...sort of sitting (for 10-20 seconds at a time and getting better each day!)
PhotobucketPhotobucketI have been doing a lot of soul searching after my "this and that" post the other day. I feel like a schmuck. It absolutely makes no difference what he does and when as long as we're working on it and having fun doing so. It is not like we're just being lazy. Calvin has Trisomy 21 afterall! This is real scientific stuff we're up against here. I love Calvin. I think he is so neat. He works and grunts and smiles and keeps on amazing me. He is an awesome person.

3 random resources

I've been wanting to share these:

acne: something I've struggled with for too long...I think I've found what works for me, GSE or Grapefruit Seed Extract. When I have something flare up, I put it on directly (yep, it says not to, but I used myself as a guinea pig and I was fine, though I wouldn't do it too often) and they dry up extremely quickly. Also, I made my own toner with 2.5 ounces of distilled water and 30 drops of GSE. I also do not use that every night but you probably could. You can do stronger or more diluted if you needed as well. Good luck with that and let me know if it works for you. I know I would have liked this concoction 15 years ago. *Check out that link, GSE is an awesome product for many other things.

learning letters: Meet The Letters dvd. Nolan is liking that right now and I am impressed with it. It teaches both upper and lower case and it is not full of a bunch of fillers, just the letters (there are more to the series, too). Nolan watched that today and was using his dollar bin microphone and repeat the letters.

baby large motor development for infants until walking: Baby Builders dvd. It is okay - it definitely doesn't replace a therapist. I would have liked this with my first two as well - it is not just for kids who need extra assistance.



Tuesday, February 22, 2011

This and that

My MRI results showed no mass or disc degeneration. As Joe said, that is good AND bad. So, my chiropractor is now using ultrasound therapy and we'll go from there. I am very grateful for those results and hopeful that with rest and more work on stabilization that I'll be back on the roads this spring. I might not be running the half-marathon that was my original goal, but maybe the Stillwater 10 in July! That won't be so bad. I guess I just have to slow down.

I am learning a lot about pacing my goals by having 3 children, especially Calvin. We are working a lot with him sitting and pushing up. I admit it is frustrating for me to see other kids with Ds his age that are bigger than him and doing so much more. However, I sat and just looked at him yesterday. I saw Calvin and I love him and accept him. After all, I know I want to be accepted despite my lack of so many abilities.

Saturday, February 19, 2011

using Photobucket

At first it was a pain until I discovered the iPhoto plugin (middle of right hand side):

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I clicked on 'get it now' and thought I'd just try it...
Well, I like it. It is easy and quicker than using the upload tool with Blogger. I can go into iPhoto and select the pics I want to use.

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Then go to file, export:

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Then this pops up:

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Notice the tabs on the top, one is for Walmart (my mom would then approve!)
Now, I just login with one click and resize on the right and voila, done!

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The rest is really easy. Obviously this is for iPhoto, but there are other plugin tools for other programs.

Still cannot get enough

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Wednesday, February 16, 2011

Feedings, etc...

I have been procrastinating with this post for good reason: it is going to be long. I didn't know how to do it and it be resourceful to parents with questions. The best idea I have is to go monthly and cover some of the basic topics in there.

Prenatal/Experience:
I nursed my first two children and figured I would with the third. Then I found out, prenatally, that Calvin has Ds and I was warned by many he might have difficulty nursing. I recall a NICU doctor who was about 65 and male, telling me how it would be likely he would have trouble. I told him I have nursed for 27 months and with some difficulty, so I was not coming in to this without experience. I felt myself getting defensive and wanted to ask him: "...and how many months or children have you nursed?" But, I know he saw more than I did, so I just sucked it up and decided that even if Calvin struggled at first and didn't start until he was 4 months old, I could live with that. Little did I know, that is exactly what would happen. Photobucket
thanks for borrowing us the shirt Aunt Katie

As I mentioned, I nursed my others. Evan nursed very well but not for the first week. He had jaundice (as did Nolie) which makes babies very sleepy. I recall being told that maybe nursing just wouldn't work for us (by a nurse when Evan was 3 days old). Little did she know, I was not the type to just give up and walk away; accepting defeat. So, I asked for help and was grateful to get it. I would wake up to an alarm every 2 hours, try to wake Evan, latch him (very painful for about 3 weeks), keep him latched, wake him, and over and over for about 5-10 minutes all while he cried when woke (a cycle of sleepy baby, wake by undressing and tickling feet, crying, latching, falling asleep, waking, crying, latching, falling asleep, etc.). It was tough! I would pump afterwards and syringe feed him what I pumped. Then I would wash the parts and crawl back into bed for roughly one hour of sleep before the alarm would go off again. I cried a lot. I realized why many mothers do not nurse. It was hell those first couple of weeks.
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Now I know (from time in the NICU) that bilirubin levels usually peak by day 5. Also, fluids help a lot and there is a breast-milk theory (it has been a theory for a very long time - without any proof) out there so some doctors encourage use of a little formula to get over the 'hump'. I did that for about a day with Nolan. I would nurse him, syringe feed him what I pumped (like with Ev) and then give an ounce of formula. It is evident in the very early days postpartum, that nursing is not easy for everyone, and wasn't for me with any of the kids.
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Nolan nursed all the time, day and night, for months. He was not big in to solids and I weaned him at 14 months. It was during these late months with both boys that I realized how special nursing was. I encourage anyone willing to try (or just open to the suggestion) to nurse. From personal experience I can tell you the bond is different. I feel as though my child is a part of me when I am nursing. Please do not feel as though my message is that formula is bad and you should feel guilty if that is what your child ate/eats. It's just that nursing is a experience that is more than just nutrition (though it is the ideal nutrition, and scientifically proven to be so). It is a way of being with your child that extends to things beyond food. It is also easier in many, but not all, aspects.

These are all reasons why I am so grateful to God that Calvin nurses. I'll tell you how we got there - though it was definitely not in my control.
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Prenatally:
I took choline prenatally and do to this day.

Month ONE:

Calvin was born 3 weeks and 1 day early. He was placed in my arms for roughly 1 minute before being whisked away to the NICU (very sad for me still). Calvin was diagnosed prenatally with Down syndrome and a Complete AV Canal defect. His cardiologist expected Calvin to do well after birth but did suggest going to St Paul to deliver him as I would be closer to him for his NICU stay. He was born at 11pm and I did not see him until 1am. I did not try nursing him until about 6am. That went against my every fiber.

I did pump right away and barely got a drop. Those drops are hard to come by and do not at all indicate how successful nursing will be (supply wise). I spent a lot of time at the pump and I plan to give pumping tips in the end.

After Cal was born Joe went to the NICU and came back telling me they placed an NG tube to give him formula as his blood sugar levels were a bit low. Again, I am still frustrated by much of his NICU stay. But, I won't get into that here as I already did back when he was born and nothing can change that. However, if you are pregnant and reading this, I would advise you to do a lot of research and advocate for your nursing relationship if that is what you want. I had to demand to hold Calvin in the first couple of days. One nurse in particular gave me a hard time about taking him out of the warm issolette. And, unfortunately, I sensed too much prejudice against Calvin and his abilities, as he is not considered normal (one nurses' view, but one that dampened the first couple of days, which are crucial for not only nursing, but just the mother/child bond formation).

Making up for that nurse was an excellent staff of lactation consultants, speech therapists, and the occasional encouraging nurse (God staffed some sweet women on most of our days). The consultants were always positive and encouraged me to keep trying and also helped make my *pumping a success.

Calvin did not eat well in the NICU. He did have a swallow study and was diagnosed with aspirating, or breathing in his food. I did try nursing every day, a few times, and it rarely went well. He was sleepy as most babies with Ds are. And with his heart condition and aspiration, well, we didn't have a good hand for betting on a nursing baby. We left the NICU thickening bottles of formula with rice cereal. I was angry and felt sick mixing up such bottles. However, he aspirated breast-milk thickened with Simply Thick, so that was not considered safe at the time. We left the NICU on August 9th, when he was 2 weeks, 3 days old.

Calvin preferred the following bottle, by MAM:
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There are 4 nipple sizes and I did not discover the fourth until we came home after OHS and he was no longer aspirating. The fourth size is I believe X, for thickened foods! Seriously, that would have saved us some work making the holes bigger.

The first 4 months were hell when it came to feedings. I was always working to improve the system and was never satisfied because I just wanted to nurse him. I'll get to more of this...

Calvin ate, with a lot of coaxing, about 12 ounces of the formula/rice cereal mixture. He became constipated and I hated it and decided I was done and he was going back on breast milk.

Month TWO:
At Calvin's one month cardiology appointment I told Dr. Sutton that I wanted Cal on breast milk. He encouraged me to go for it. The pediatrition we had just seen was not helpful, so I found a nutriotionist to help me. Karen R. Hurd. Her site is listed on the right. She started us out on 1/4 tsp of psyllium husk powder but this was very vague so I had to experiment. The psyllium also clogged the third largest nipple hole. Also, we knew Cal needed more calories. The rice cereal was adding some with the formula but since we changed that, we needed to find another source. So, I added Light Olive Oil. Here is what we did for month 2:
about 2 ounces breast milk with 1/2 tsp psyllium and 1/2 tsp oil.

In month 2 I started adding a probiotic. That should have been done right away! On the 9th of
September I started using Guar Gum to thicken the bottles. The psyllium was making Calvin
poop as often as he ate. So, I started using about 1/8 tsp of psyllium and 1/4 tsp Guar, with the oils still.

Month THREE:
It was in the third month that I eliminated psyllium and stuck with Guar Gum. Guar Gum and
Xanthum Gum are similar and Xanthum is used in Simply Thick. Why didn't I just use Simply
Thick? And, what about when I mentioned he aspirated Simply Thick in the NICU?

Well, Simply Thick has added ingredients as preservatives AND it is expensive. So why would I
use that? Sure, you have to give things like Guar and Xanthum and Psyllium time to thicken so
it just takes some thinking ahead. I usually mixed up a bottle, pumped, then fed Cal.

What about aspirating Simply Thick in the NICU? Well, I was gambling to be honest. I felt that Calvin was gaining
strength and coordination and therefore could handle it. I watched for signs of aspirating and
said my prayers.

Calvin started eating more so we eliminated the oils. We also decreased the Guar to about 1/8
tsp per bottle.

Finally, we started using NuTriVene-D and Nordic Naturals with Vit D. More on this here.

It was also in the third month that Calvin started latching on fairly well. I would pump then try.
It is very important to keep trying and not be afraid. You can back track through my posts
and read more if you need, or contact me in the comments section. I can answer questions.

Calvin had his heart surgery on November 15th, just a week before turning 4 months old. He
did a follow-up swallow study before we left the hospital and he was/is no longer aspirating. It is my belief
that because he struggled to breathe, it was too much work to coordinate breathing with swallowing.

Month FOUR:
I put away the bottles the day after Calvin turned 4 months old. He was a messy eater and it was
still a lot of work to get to where we are at today. However, I was committed to nursing. I treat
it like I did with the bottles. I feed him as often as he wants/needs but no less than 5 times a day.
I push for 6.

TODAY, almost 7 months old:
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NuTriVene-D is messy, all day long with burp-ups

Calvin eats fairly well. I still have a cloth under him as he eats, but it is not nearly as wet and I
believe he will get to the point where he no longer needs it. He likes to nurse.

We recently went to one bottle a day to get NuTriVene-D, Nordic Naturals, choline, and a probiotic in him
directly. I was taking those but I've had the break I needed from the extras. We have Longvida
Curcumin in the cupboard but it clogs the nipple, so that will have to wait for solids. Also, you'll notice
Calvin does not get the third NuTriVene-D product. It is the enzymes, but nursing babies do not
take that.
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*Pumping:
As I mention, the lactation consultants helped me make pumping a success. I honestly went in the first few days feeling like I knew what I was doing (I had nursed 2 others and did my fair share of pumping). However, I took their advice and watch a video on exclusively pumping and learned the following:

often: pump every 3 hours: I did midnight, 3am, 6am, 9am, noon, 3pm, 6pm, 9pm for the first month. I cut out the midnight session in the second month because my supply is good. Calvin did not eat that often because he was too sleepy. So, I gave myself that break and got up once between 9pm and 6am.

handsfree: bras are expensive, you can use a sports bra or a belly band from the hospital and cut holes for the shields (free and washable and last a long time).

hand express: pump through first let-down, then stop and hand express (takes practice but is easy), then rest a couple of minutes and pump through another let-down ( or a total of about 20 minutes when doing both sides at once). Make sure to hand express when finished (this is all in the video I watched).

Prolactin levels: can be affected by your over all health (exercise/diet). Some say exercise negatively impacts production levels but I did not find that to be the case with my 2 ounces per hour (pumping every 3 hours for the first month and then cutting out a session in the middle of the night after that). The key to production is prolactin levels and those are dependent on how well your doing with nursing or pumping.

I recently read this blog post and it has a ton more information on pumping and nursing. Again, ask if you have questions! I am always happy to help. There are always plenty of options when it comes to feedings and pumping and milk production. If you struggle in any of those areas, get help.

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Monday, February 14, 2011

stream of conscience

I'm using the title I often see on other blogs such as MckMama (visit for some pics of her trip to Africa - I was showing them to Evan and I'm sure he will one day see that for himself) or Enjoying the Small Things. It is exactly what this post is about, with a lot of new pics sprinkled in. First off, I "broke down" and am using photobucket for the pics on here so they can be larger. I found, once again, trying something new is quite nice. I downloaded an upload (confused yet?!) application to iPhoto and it is working quite nice (and quick).

Well, I had an MRI today. I do not know any results yet, but this whole ordeal has yet again brought on some more insight. First of all, I realize I tend to put the horse in front of the cart too often. Let me start by saying that the worst part about this is my level of activity is being slowed down. I am not liking it. I don't exercise to be thin (as I was last thin when I was about 10 years old). I exercise to have energy and feel emotionally stable. No jokes please.

So, injury is a cruelty. First you cannot physically exercise and then to deal with the emotional struggle of that, you take away a tool that helps you, well, deal with the emotion struggle of that. Get what I'm sayin'?

So, I've been bummed. I told Joe that the next marathon I do will be in a wheelchair. Then I got to thinking about people who loose limbs or become paralyzed. Wow. I am sorry I did not spend more time thinking about that before. I need to just hush.

Well, I have been realizing a lot lately. No, not everything. And, a big NO, I am not better than anyone because my life has presented a certain experience that others' have not had. It just is this way. I want to be humbled (but it is a painful process). And, oh, have I been humbled. Do you think that means humuliated? Cuz that I have been lately too, in a big way. I am a judgemental, pretentious jerk that has to grow up in more ways than one.

You know what I love about growing up? It has the ability to strengthen. Joe and I are perfect examples of this. It is a Valentine's like no other. He and I are doing really well, and that is the first time I have been able to say that in too long. We have been together for...roughly 16 years. We have had to grow up. Together. We have been spending some long amounts of time talking. And, I mean anything more than 5 minutes is long, so when it has been an hour, I am amazed. We talked tonight about what we want to have happen to our bodies when we die. He wants me to bury him in the garden. I told him it is hardly legal but that assuming I am still around, I would want to do what he wants. So, he wants to be cremated and spread in the garden. I don't think that's legal either, but he asked if the cremation police will be out to check on us. Well, we had a good giggle over that one. Spending time talking was the best gift I could ask for.

"Also in the news": Calvin is still as cute as ever and giggled yesterday when I saw him after being gone for a few hours. That just made me think of my worry that he wouldn't know me as his mom. Well, talk about horse...cart. I am so grateful for his health and nursing and all the rest. Oh, and his eye appointment was great. His eyes are what any 7 month old's should be like!
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That is the blanket I made Evan: dinos on one side and jungle animals on the other
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The following batch is from the other day when I attempted to get a nice one of them together. Well, they needed time apart more than time together.
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I think this next one is a favorite of mine!
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Nolan is Nolan. Check out the Out of The Mouths of Babes page for more.
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Evan is also Evan. Full of soon-to-be-five attitude and behaviors. I stayed up last night and made him a gee-gee (blankie) for his Valentine gift. He told me I am the best mom. Sure I am, until I don't do something in the future. But I'll take it for now. He likes it and that says a lot because his "ellow-gee-gee" is his fave.
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The boys rolled in this little bit of water they found. It is just the beginning of a long spring...
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Brothers. When Nolan was born we joked about naming him "Brother Bear" cuz Ev was really into that Disney movie. Little did we know we'd have all three: Sitka (oldest), Denahi (middle), and Kenai (youngest). Here are Sitka and Denahi playing hide-and-seek and goofing off:
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Denahi (Nol) usually does not hide, he'll count along with Sitka (Ev) and then yell "found you!"
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