Gaining...

Erik gained 10 oz. since his last appointment. So, praise the Lord, no hospital time for him. We had a great CHRISTmas with Erik at my parent's house in Arizona. He was so sweet and cuddly. Nothing new to update you on. Just wanted to give thanks to God for helping Erik gain the weight he needed. What a blessing!

Losing weight...again.

So, Erik started losing weight again. He has an appointment with the gastorologist (sp?) tomorrow. Hopefully it's an easy fix like just upping his amount of food. At almost 22 months old, Erik weighs only 11 lbs. 12 oz. It has been a long and bumpy road for our sweet miracle. I am just so thankful to God that He has allowed Erik to be a part of our family. He is just so sweet. I know he has handicaps, but that just makes him who he is. He is precious, and a miracle and he has a purpose in life just like the rest of us. I can't imagine life without him. I am so glad he is here and that's he's ours to love! God is so good to us. I am praying that Erik will be okay and that he will start gaining weight again. He is our precious boy!

Teeth

Well, Erik has 4 teeth that are completely in and 2 more teeth trying to break through. He grinds his teeth at night though. Isn't he awfully young to be doing that? What is he stressed about? Haha. This past Saturday I had Erik over night by myself for the 1st time. It was a fun sleepover with my sweet nephew. In a couple of weeks I am going to let his big brother, Justin, (age 8) come over for a sleepover too. I love my nephews. I just wish the oldest one (age 16) would behave nicely so I could spend quality time with him too. But he's too busy with his friends to care about family. I love him anyway:0) I am thankful to the Lord for three handsome nephews. I don't have much more to say. Erik is growing, he wears size 3-6 mos. clothing now. His feet actually reach the edge of his infant carseat. If you are reading this, please pray for Erik. Thank you.

(Above) Erik with his big brother, Justin at the Pumpkin patch.

I love the above picture of Erik smiling in the swing.

I took Erik and Justin to the Pumpkin Patch last Saturday. Erik loved sitting in the swing. He smiled and kicked his little feet. I look at how small he is and find it hard to believe he'll be 2 years old in February. He has come a long way though. I love my little buddy.

Cutest boy!

Erik is still doing alright! He continues with therapy and he continues his tube feedings. I would love to see him get weaned off some of his meds and I'd love to see him start developing physically and mentally. As of right now, at 19 months old, Erik still just sits in his carseat or bouncy chair. He does not sit up, roll over, hold toys or talk. He does coo and smile though and that makes my day! I love this little guy and I know there's a special reason that the Lord saw fit to put him on this earth. He has a purpose for this baby. He's our special little miracle!

Seizures

Erik resting in the ER at Children's Hospital

Erik all hooked up in the ER

Erik was taken by ambulance on Friday to Children's Hospital. He had an epileptic seizure and he turned blue. They gave him some medication and sent him home. They didn't seem to care. The next day (9-12) the same thing happened again and he was once again taken by ambulance to Children's Hospital. This time they decided to figure out what was going on. He isn't having just infantile spasms anymore, now he has epilepsy. So, they are taking him off two of his medications. He's going from 5 medications down to three. They observed him at the hospital for 24 hours and sent him home last night. This poor little guy has been through so much in only 18 mos. I love you Erik, you're a fighter!

Mr. Chubby Cheeks

Erik is now 17 months old! Wow! He's finally getting BIG! He weighs over 13 lbs. now! He has some really chubby cheeks, perfect for kissing:0) I love this sweet boy. He is still small for his age and he is delayed, but he is special. Although we do not know exactly what's wrong with him (we have reason to believe he has some sort of syndrome, or cerebal palsy), we love him just the same. My special little man. He is the youngest of my three nephews, so he is a bit spoiled. Everyone spoils the baby of the family, right? Anyway, he's growing. And he's a sweetie pie. He loves to smile and giggle. You just can't beat that!

Mr. Chubby

Ok, so Erik weighs 12 lbs. 14 oz! WoW! He's getting so chubby. I took the above picture on July 14th. Erik is 16 mos. old now. Although still small for his age, he has definately gained a lot of weight. Only 1 lb. 3 oz. and 12 inches at birth, we are glad he is nearly 13 lbs. now. Erik has many delays and pretty much still acts like a baby of about 6-8 weeks of age. He probably needs hearing aids and possibly glasses. We love our little miracle though and I'm glad he's here. He has seen many specialists and so far we still don't know what is causing the delays. I believe he has some sort of undiagnosed syndrome, but we shall see. The geneticist did see something unusual in his bloodwork and wants to see him again to take more blood. Hopefully we'll get to the bottom of this so Erik can live his life to his fullest potential. I love you Erik!

Still here

Just wanted to say that I'm still here. I know I haven't been updating my blogs regularly, but I am around. Erik is doing okay. They are still trying to figure out the right meds to get his spasms under control. Erik is getting very chubby! My brother (his dad) is home, safe, after 4 weeks in a Las Vegas hospital recovering from a broken back. At Erik's last appointment he weighed 12 lbs. 7 oz. Way to grow little man!

1st haircut

During his haircut.
After his haircut.

Erik got his 1st haircut yesterday. He did fine while the man was cutting his hair. Now he looks like a boy again. He is 15 1/2 mos. old now and doing well. His daddy came home last night after spending one month in a hospital in Las Vegas recovering from a broken back. He was happy to see Erik and his big brother, Justin, again after not seeing them for nearly 4 weeks!

Hospital again

Erik had to go back to Children's Hospital again on Monday night. Praise the Lord, he only had to stay for 1 1/2 days. They weighed him and he is 11 lbs!!! They changed his formula and changed the dosages on his medications. He was admitted because he was having trouble breathing. They cleared his airways and gave him some breathing treatments and some supplementle oxygen and they were able to send him home around midnight last night. I am so glad he didn't have to stay too long this time. My brother, Erik's dad, is being released from the hospital in Las Vegas. He was injured in a boating accident 3 weeks ago where he broke his back. After 3 weeks in the hospital, he is going to stay at my parent's house in Arizona until he is able to travel the 300+ miles back to San Diego. So, hopefully soon, he'll be home and able to take care of Erik again. For now, Claire's parents and I are on the job. Erik is doing well otherwise and I look forward to seeing how he progresses as he gets older.

Laughter!

On Friday night, I FINALLY got to hear Erik laugh. It was sooooo cute. He did a belly laugh when my friend, Renee, was holding him. He laughed out loud twice. I just love that baby boy. Also, I was holding him on my lap and he was babbling. So, I looked him in the eye and started saying "Mama, mama" making sure my lips emphasized the "M" in mama. After a few seconds of studying my lips, Erik began mimicking me and he started saying "mama". He seems to be doing more and more as time passes. We just really have to start working on his muscles. He has almost no muscle tone. He can't hold his head up too well and he doesn't sit up or roll over (he is 15 mos. old). But, I showed Claire (Erik's mommy) some excersize's to try and it seems like they may be working. So, Erik is doing well and hopefully he'll begin to catch up. I love my little man:0)

Bigger...

Erik is getting bigger! He weighs approx. 11 lbs. now! Woo hoo! He has his appt. to check his hearing again on June 3rd. Hopefully he can get to that appt. My brother (Erik's dad) broke his back and is unable to drive right now. My sister in law has seizures and can't drive, my parents live in another state and I work full time. My sister in law's dad said he should be able to take him. So, I am hoping that gets done. If he needs hearing aids, then he needs to get them. The sooner the better. So far, that's all that's new. Erik is doing well!

Little man.

Here's a recent picture of Erik. He is staring at the toys on his playmat. He is outgrowing his 0-3 month outfit as you can see by this picture. I love this little man! I look forward to seeing all that he achieves as he grows into a young man.

He gained a little...

Well, Erik had a dr's appt. today and he weighs 10 lbs. 2 oz. and is 23 inches long. So, he hasn't gained as much weight as we thought he would, but he has gained a little over a pound. So, with that, there's not much more to update you on. Keep him in your prayers please.

The button

Today Erik is getting the g-tube removed and having what's called a mickey (sp?) button put in. He will no longer need to be fed 24/7, so we are excited about that. The button is smaller and more convenient. It will also enable us to give Erik a regular bath instead of the sponge baths he's been getting. So, hopefully the button will make life easier and hopefully it will make Erik more comfortable by and by. Tomorrow we should find out how much he weighs. Erik is doing well.

Growing!

Erik smiling:0)
Erik in his carseat. You can see the line for his feeding tube.

So, Erik is growing. Finally! We don't know how much he weighs right now, his next appt. isn't until next week. I will guess that he weighs approx. 12 lbs. His cheeks are chubby and he fits bigger clothes. It's so nice to be able to call him a chubby baby. He looks more like a 6-7 month old than a newborn now. The pictures above were taken in Arizona, his 2nd trip to visit his grandma. That was over Easter weekend. This past weekend we took him to the beach. I will post those pictures later. He is doing well and growing. We are still hoping to find the right meds for his infantile spasms (seizures). He is still having several "episodes" throughout the day. They have lessened, but he still has them. Those need to be controlled or he can suffer brain damage. Please keep praying for Erik. We love our little fighter! He is 13 mos. old now.

Gaining weight.

Well, Erik has been home since Saturday. The last time Erik was weighed, he weighed 10 lbs. Just last night, Claire put an outfit on him and it was a size 3 mos. Erik has never fit in anything bigger than newborn size. Now he's growing and fitting in larger clothes. Erik got his bandages taken off yesterday. His incision is healing. The only thing that still needs major prayer is that the seizure medication is still not working like it should. They need to get his seizures under control because they can cause mental retardation. Please pray that they find meds that work. God is soooo good!

Home again

Erik's hand after having his I.V. taken out.
Erik's feeding tube and band-aid where he has stiches.

So, Erik is finally home. He came home on Saturday. He spent 12 days at Children's Hospital. He is still sore but is otherwise recovering. The home health care nurse came and showed us how to set up the feeding tube and machine. It's not too hard. Erik finally hit the 10 lb. mark. It's the 1st time he's ever had a 2 digit weight in his life and he's 13 months old. It is so great that he will finally gain weight and grow. Other than that, not much to report. Oh, my brother bought Erik a new crib and he seemed quite comfy in it.

Erik, the fighter

So, Erik is doing better right now. He ended up having a major surgery. He had a feeding tube put in, a valve put on his esophogus, and they found out he had 2 spleens, so they took one out. They then closed him up, took him to rocovery and gave him morphine. So, at first he was kind of out of it. Yesterday though, he was alert and even babbling. So, he is recovering and will hopefully begin to gain weight. They gave him pedialyte today and if he does well with that, they will start him on formula. Now he should gain weight. In fact, I can hardly wait to see what he'll look like bigger. He has always been so tiny. He is 12 mos. old and weighs less than 9 lbs! So, that is the update for now. Erik is quite the little fighter. I am so proud of him!

Surgery

Erik had his surgery today and may still be in the operating room as I write this. His surgery was scheduled for 1:30 p.m. and it was expected to last 2 1/2 - 3 hours. The surgeons decided to put a valve in his esophogus to help prevent him from vomiting his food. This made the surgery time longer and made the surgery more invasive. I have been praying for my little buddy all day. I can't wait until my brother calls to tell me Erik is okay and how it all went. Hopefully he will recover soon. I love you and I am praying for you Erik! Love, Your Aunty:0)

Update

I just got off the phone with my brother and they have gotten a result back from one of the tests. Erik does have a seizure disorder (I don't know what kind) that can result in mental retardation. They are hoping that the medication they give him will work and help him to grow normally. Please pray that they find the right meds so Erik isn't brain damaged. It is sad news for us to hear. I love this baby no matter what, but I'd love for him to be able to learn to walk and talk. He is so special to me and I just adore him. At 1:15 this afternoon (3-25-09) They are going to do the suck and swallow test to see if the food goes to his lungs. I hope he passes this test, because if he doesn't, they'll have to put a "button" in his stomach to feed him formula. They are also going to do an MRI today to see what's going on in his brain. Hopefully there isn't too much brain damage. I know he's intelligent right now because he recognizes his family, he smiles and coos and he also has an opinion when you do something he doesn't like. Last night when the doctor was trying to measure him, he fought her. When the nurse started messing with his IV he fought her. When I was aked to help hold his arm still so she could change the shunt, he was calm and peaceful, which, of course, made me very proud. I know he know's who I am. He didn't fight the nurse or cry because he had his Aunty. Once, he did start to fuss, but then I just kissed his chubby cheeks and he relaxed right away. If Erik does need a "button" in his tummy, then they will be doing a surgery today. PLEASE PRAY!! I know most of you don't know Erik, but you know me and I am begging you to pray! "The effectual, fervant prayer of a righteous man availeth MUCH".

Smiles

Erik was all smiles last night.
He's so precious!

Erik was all smiles last night. This was taken right before they had to take him to the hospital.

In the hospital...again!

Erik had to go to the hospital again last night. He lost weight (he went from 9 lbs. 6 oz. down to 8 lbs. 12 oz.) and the doctors are concerned. He also has what appears to be mini-seizures. So, the pediatrician had him admitted to the hospital last night. I am praying that they find out quickly what is going on with him. I also hope it is something that can be cured or at least controlled by medication. I know Erik is a fighter. I love this little guy and I am hoping we will now get some answers. He's in a good hospital with specialists.

Meeting family

Erik's 2nd cousins, and Great Uncle
Erik's great-Aunt, Judy.

Erik with his 2nd cousin, Ray.

After leaving Arizona, I decided to take Erik over to meet his great-Aunt, Judy. She had not seen him in person before. And to my surprise, 4 of my cousins (Erik's 2nd cousins) were there too. So, here are some pictures from that meeting.

Arizona

Erik with Aunty Karen and big brother, Justin in Oatman, AZ.
Snuggling with grandma

Erik in Oatman, AZ with a donkey looking at him.

Well, I took Erik out of the state of California for the 1st time. We went to see his grandma (my mom). We also went to Oatman, AZ for the afternoon to see the old town. We ended the trip on Sunday after going to church in the morning. We then headed back home, but not before stopping in to visit with some relatives.

Arizona!

Tonight around 6 p.m. I will go to my brother's house and pick up Claire, Justin and baby Erik, then head on over to Bullhead City, AZ to visit my parents. I know my mom will be happy to see me and Claire, but I'm sure she's more excited about seeing her grandsons. I have never traveled out of state with Justin or Erik before, so we'll see how this goes. In fact, it will be the 1st time Erik has ever left California. I will be sure to take lots of pictures and post a few later. Probably not until Monday or Tuesday though. I can hardly wait to hold my little buddy again, it's been almost 2 weeks since I have seen him. I will say though, that last time I saw him, I was holding him and kissing him on the cheeks and he'd look up at me and smile. My heart melted! I don't get to see him smile very often, so when he rewards me with a smile, I cherish it. He smiled at me a couple of time that night. Precious, little guy! I love him sooooo much! I am so happy to have 3 nephews, all of them are precious to me. I thank God for them!

Going on a trip

I am taking Erik, along with his mommy and big brother, on an overnight trip to Bullhead City, AZ this weekend. We are going to visit my mom and of course mom wants to see the grandkids. I am hoping to find a good church near my mom's new place. My mom has not seen Erik since he turned 1 yr. old. (She moved to AZ the week prior). So, this will be my 1st time taking Erik out of the state of California. In fact, it may be the 1st time he has ever left CA. I will post pictures after we return. We are leaving this weekend for only 1 1/2 days.

Birthday pictures.

One year old!!!!

I can't believe it! Erik is one year old. (He turned one yesterday). Tonight we are going to do a little cake for him (hopefully). I will take pictures and post them later. I am so happy he is with us here today. I can't believe it has been one year already! Time does fly by so fast!

Erik, our miracle!

His tiny begining...
I can't get over how tiny his hands were!

Well, on Sunday Erik will be one year old!! I can hardly believe it! Where does the time go? Before I know it he'll be in kindergarten. Erik has been smiling and cooing a lot more lately. My mom (Erik's paternal grandma) has gotten some of his jibber jabber on video and she said she has a few pictures of him smiling. I have not seen these pictures yet, but I have seen him smile before. I hope I can catch his smile on my camera sometime so I can share it with you. The fact that he is smiling more often tells me he feels better than he has been lately. I look forward to seeing him progress with his motor skills. I'd like to start seeing him roll over and reach for toys. If you have a healthy baby, be thankful. I'd love for Erik to be getting into things. I wish I had to chase him around. Don't wish for your baby to stay small, believe me, it gets old after awhile. The nice thing about a rapidly growing child, is that you get to see the new things they will do everyday. Erik, on the other hand, has pretty much been doing the same thing for a year. He eats, sleeps and, well, you know the story. Babbling and smiling is the only new thing he does, oh, and occasionally he laughs out loud which I hope to hear with my own ears. I am so greatful that he is alive and generally healthy. I know in time he will start to do things. When I look at where he started, and see how far he has come, I always remember to thank God for Erik. He's our little miracle! I will post pictures of him soon from his 1st birthday. What a day to celebrate! His journey has been long, but worth it. I look forward to the day he can tell us what he's thinking. I also look forward to telling him his amazing story. What an amazing baby! Thank you to all who have been following his story. I will keep you updated as often as possible.

Almost a year old.

Well, little Erik is nearly a year old. He is still not doing much. He is behind for his age (even for his adjusted age). I took care of him and his big brother, Justin, this weekend and Erik spent a lot of time coughing. Poor little guy. He had no problem filling his diapers though. I think I changed him a hundred times a day (an exageration). Otherwise he is doing well and is cute as ever. That's all for now.

11 months old!

Today Erik turned 11 months old. Last night I bought a gift for his 1st birthday (I know, it's a month early, but it was on clearance). On the day he was born, we weren't sure he'd live long enough to see his 1st birthday. I am so happy that he made it. He truly is a miracle in every sense of the word. I believe all babies are miracles from God, but these tiny, micro-preemies are even more so. They have so many hurdles to jump in their 1st 3 years of life. I often wonder about how much pain Erik goes through on a daily basis that he can't tell us about. He's on so many medications and his tummy hurts him after he eats. Yet, the little guy still manages to flash us a smile once in awhile and he is sure to make himself known by excessive babbling. I love when he looks me in the eye. I wonder what he's thinking. I love to smell the top of his baby head. I love it when he falls asleep in my arms. He is a little wonder. I don't forget it either. I often find myself thanking God for Erik when I hold him. He is so alive and warm. I look forward to his next several birthdays. I look forward to getting to know him more and more each year as his personality developes even more. I love you Erik!

Infections... again.

So Erik had a doctor's appt. last week and it turns out he has yet another lung infection. This is why when I take him to church, I don't let anyone hold him and he doesn't go in nursery. He gets sick so easily. It may appear that I am selfish by not letting anyone hold him, but he doesn't need the germs, so it's for his protection. Well, I shouldn't say I don't let anyone hold him ever, the 1st two times I took him to church, I let my close friends hold him, but since he has been getting sick so easily, the past few times he has gone to church with me, no one got to hold him. I think I'll keep it that way until he's closer to 1 1/2 yrs. old or when he gets stronger, whichever comes 1st. I visited him tonight, just hung out at my brothers. Erik is such a cutie. I don't want to leave Erik's big brother Justin out. He's a handsome boy too. I love all three of my nephews so very much and I am proud of all of them. But, since this blog is about Erik, he gets mentioned the most. Oh, Erik weighed 9 lbs. 6 oz. at the appt. which is only 2 oz. more than a month ago. They put him on stage 2 baby food in hopes to get him chubbier. Well, that's all for now. Erik is doing okay even with the lung infections. He is on antibiotics again, and is feeling better. Until next time... God bless!

Brothers.

My mom took the boys (all 3 of them) to the mall to get their 1st professional picture together. So, here is Erik with his 2 big brothers (my wonderful nephews), Christopher, 16, and Justin, 7. This picture was taken January 18, 2009. Erik slept through the whole thing!

Laughter

My brother called and informed us that Erik laughed out loud for the 1st time! I guess my brother was blowing raspberries on Erik's belly and he laughed. I wish I could have heard it. Erik is 10 months old and it's the 1st time he has laughed out loud. Hopefully we will get to hear more of his laughter in the future. Erik has alway's been such a serious baby.

Still here.

I haven't signed into this blog in awhile so I thought I'd drop a note and say hi. Erik is doing well for the moment. No major things to report. That is a blessing though. He is breathing well right now and he is growing. Now that he has been on anti-biotics to clear up his ear infection, he is back to cooing and not being fussy all the time. He is eating well and that is good too. I will try to get a new picture of him smiling soon. Smiles are one thing he doesn't do often, so that will be a challenge. Oh, my friend, Patty, gave us an exersaucer for Erik and he loves it. We put blankets in front of him to support him and a large folded blanket under his feet so his feet aren't just dangling. Even on the lowest setting his feet can't reach the bottom. He is so precious and I am reminded all the time of what a miracle he is and that he is here because so many people prayed for him. Thank you to all who prayed. God blessed us with a beautiful baby boy to enjoy who we were told may not make it. God is more powerful than all those doctors!