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Saturday, April 30, 2011

Project backyard

Our backyard is finally done!! Once again, Ryan and I are super excited about it. We’ve been waiting to have a backyard for over a year and are relishing every minute that we have with it. Every day, Ben asks to play back in the backyard with his cars and we’ve already been able to unload some toys back there.

Without further ado, our new backyard:

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You may not be able to see it but we cut into the wall and made a gate for more access.

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As you can see, we did some major work back there. We still need to power wash and paint the back wall but after that, we are done. It’s kinda small but we sacrificed backyard space in order to buy in one of the nicest suburbs in Sacramento. Plus, we have the park right behind our wall that has plenty of space for any other activities we want. Hope you enjoy seeing our new space!

Wednesday, April 27, 2011

CF update

I promise my next post will be before/after pictures of our backyard. I’d have to clean up all the toys that are already littering it before I take the after pictures. I’ll do that this afternoon. For now, I thought I’d give a brief update on Ben, CF wise.

We are almost at the end of our first week of our second straight month of Cayston to clear up the pseudomonas growing in his lungs. This was my originally thinking of what I had wanted to do and Dr. N agreed. When the month is up, we will finally reculture Ben. If Ben still has pseudo growing we will switch it up again and go from one month of Cayston to another month of Tobi, switching months so he is always on an inhaled antibiotic. This is not the “official” plan but Dr. N is letting me do whatever I think is best at this point. I think most parents (and CF docs) would have given up by now and accepted the fact that pseudo is in their CFers lungs for good and hope it eventually goes away. Most patients start Tobi on/off for months until/if it clears up. Dr. N and our nurse practitioner have reassured me that it’s not the end of the world if we can’t eradicate it. However, I am not giving up. I refuse to accept the fact that we can’t get rid of it. While I’m not ready to jump back into IV’s, I am not going to stop trying different inhaled meds until it’s gone. Mark my words.

As I predicted, UCSF wants to do redo Ben’s blood results due to the fact that they were so outta whack when he was sick. Holding Ben down while he gets blood drawn is not something I’d put on my list of fun things to do but Ben handled it like a champ last time and the highlight of my day was watching him bypass the monster truck stickers for a Hello Kitty one at the end.

He has gained back all the weight he lost when he was sick. The chubby cheeks and thighs are back!

Tomorrow night is the CF education night held by UCSF in Walnut Creek. Dr. N is going to speak about any new advances in CF land and address any questions we have. I am excited to meet other CF parents that go to UCSF. Since we don’t live in the area, I haven’t gotten a chance to meet anyone. My mom is driving up to meet me for the evening. I am so thankful to have a mom who takes an active role in knowing more about CF and Ben’s care. It makes things a lot easier for me and I appreciate her making the drive. Thanks Mom.

I had to include this picture of Ben using his bubble making Mater as a seat.

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Excuse the mismatched outfit. This was after he threw up everywhere and I just threw whatever I could find on him.

You may have noticed that I am now watermarking my pictures. Let’s be honest, there are some crazy people out there and I don’t want random people taking my photos and doing lord-knows-what with them. I’ll try not to plaster it across our faces but it needs to be in the center of pictures or people can just cut and paste around it.

Sunday, April 24, 2011

Easter 2011

We had a fun weekend despite the nasty weather outside. On Saturday, we took Ben to the Fair Oaks Egg hunt with our play group friends and had a blast even though it was packed!

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They participated in an egg hunt then got to do their favorite activity- Run!

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And of course, poke things with sticks Smile

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This morning we did an egg hunt in our new backyard (!) with Ryan’s grandma and aunt and uncle, but it was a quick because of rain. I was delighted to find pre-stuffed Matchbox car and Thomas eggs at Target. I knew they would be a good distraction at brunch later and boy did Ben enjoy them.

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We were supposed to go to a BBQ dinner tonight but Ben came down with a nasty cough, causing me to do an extra treatment during lunch. He went into a cough fit and barfed every where including on me. He then refused to nap. Needless to say, we never made it to dinner.

Happy Easter!

Thursday, April 21, 2011

Backyard preview

I’m saving “before and after” pictures for my next post but I thought I’d put up some teaser photos of our newly renovated backyard. Ryan and I are so excited for this. We’ve dreamed of this backyard for years and now it’s finally here.

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I know, I know, not too many photos but this is a teaser post. A full post will follow. Smile

Tuesday, April 19, 2011

Stubbornness

This is a picture of stubbornness. This is a picture of a little boy who refused to nap. It was a battle of the wills to get him into bed but Mommy won. Mommy always wins in the battle of wills. However, he made it clear that I can make him stay in bed but I can’t make  him lay down.

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He finally fell forward from exhaustion and slept with his feet on his pillow. Gotta love the terrible twos!

Saturday, April 16, 2011

Prenatal diagnosis

One of my favorite Mommy bloggers, Cassie, wrote a great post on prenatal diagnosis. She went through a prenatal diagnosis with her daughter Audriana and came across an article in the NY times on prenatal diagnosis which I just had to steal!

As most of you know, Ryan and I went through our own prenatal diagnosis with Ben and I stand by my decision 100 percent. I really don’t understand the whole “wait and see” type of thinking when faced with the risks of your child having CF but I understand that it’s not for everyone and people make decisions that they feel are best for them. But that wasn’t us. I am an advocate for prenatal testing and will again with possible future pregnancies.

Just because you go through a prenatal diagnosis does not mean that abortion is an option. It certainly wasn’t for Ryan and I. We both knew, no matter the outcome, that we were going to keep our baby. It wasn’t even something we discussed, we both just knew.

I’ve said it before and I’ll say it again, our Genetic Counselor was phenomenal. In fact, we still keep in touch with her and are excited to see her join Ben’s Brigade for the second year in a row. However, since she did not have a child with CF nor one with special needs we were presented with facts. She was not able to say things like, children with special needs seem overwhelming at first but are a HUGE blessing in disguise. Let me tell you, the facts about CF are pretty grim especially when you deal with hormonal/pregnancy changes at the same time.

But Ben’s prenatal diagnosis gave Ryan and I time to grieve, time to do our research on CF and most importantly, time to prepare. We meet with our CF team when I was 7 months pregnant and were blown away by them. We decided to collect and store Ben’s cord blood in case there were medical advances and it would come in handy. I had a c-section because he was already showing signs of Meconium Ileus (an intestinal blockage) and labor could have made it worse. I was semi-emotionally prepared for a NICU stay (I don’t think you can ever be fully prepared for that though). But most importantly, it helped us be ready for what was to come.

This article debates the fact that parents may not get a broad range of information concerning prenatal diagnosis. It’s interesting to read. You can find the article HERE.

Wednesday, April 13, 2011

Cayston Update

We are a little over 2 1/2 weeks into our inhaled antibiotic and I have to say, I’m really getting tired of the three times a day treatment routine. It can be very tiring and quite frankly, all I feel like I’m doing is treatments or getting ready for treatments or planning out my schedule around treatments.

However, I’m still holding onto the hope that Cayston is it for Ben and that it will clear up the pseudomonas growing in his lungs. I shared with our NP that my thinking is for Ben to be on Cayston for 2 months straight then culture him, and do on/off months until he has three clear cultures. She said she was fine with this as there is no hand book or manual for CF. Every CFer is different and requires different treatments/routines. They are trying to figure out what works best for Ben and are willing to give Cayston 2 months to prove itself.

I am bummed because this mean we’ll go into our Southern California trip on Cayston. Disneyland, Lego Land, the beach, the zoo are all apart of our plan and it’s going to be annoying to say the least. I guess we can do our Cayston treatments at Disneyland?

Just one of those days in which I wish CF would take a long walk off a short pier.

Monday, April 11, 2011

Survival mode

I wanted to update before I left for Southern California but I didn’t have the chance. I was in survival mode since Wednesday and had no energy. Ryan had to go out of town so I was all on my own.

Ben’s fever finally went away on Wednesday but a lovely cough took it’s place. He was still sleeping a lot and had no appetite so we were taking things slow. I took him back to the doctors Friday morning for his 2-year well child examine. I was thankful it was scheduled when it was because I wanted the doctor to listen to his lungs because I was hoping to avoid a trip down to UCSF. Besides losing a pound and a half (still in the top 80th percentile), there was nothing too serious to report.

However, we did make an appointment with an Audiologist to check Ben’s hearing and were given a referral to a speech therapist. At 25 months Ben still only says a couple words and should be farther along at this age. I do not think he has a hearing problem and am not overly enthused by the idea of speech therapy. I believe he just needs more time and will talk when he’s ready. I’ll see what the Audiologist says and what the plan would be for speech therapy and go from there. I’m not overly concerned about it because Ben can throw a football and do a summersault on his own so it looks like I’m going to have a star athlete, not a scientist and I happy with that.

Ben’s blood work came back and his numbers were all over the board but his vitamin levels looked good which is what we were after. We knew his numbers were going to be off, having been so sick so I wouldn’t be surprised if UCSF wanted us to go back and redo his blood work.

My trip couldn’t have come at a better time. I was glad to get out of the house and see my family. I love Southern California, I came back refreshed and a bit sunburned. Pictures to come.

Wednesday, April 6, 2011

On the mend.

Things with Ben are starting to look up. His fever has finally gone away but he is still low on energy and appetite. I took him in to his regular pediatrician on Monday morning (which I immediately regretted because it was filled with kids hacking up a lung) and they said he’d need to come back in if the fever didn’t go away by today.

I’m also taking him in for his yearly blood drawl later today which I should have done weeks ago but was putting off. Now I’m thankful because the results will be sent to UCSF and we’ll be able to see if his blood work is showing any signs of something funky (that’s a medical term) going on. He usually rebounds a lot faster from sicknesses so the slow recovery is not easy for anybody.

On Saturday, I’m flying down to Orange County for 24 hours to celebrate my cousins baby shower and am looking forward to my mini-vaca. I only hope my little man is back to himself by then.

A BIG thank you to everyone who came out, donated and supported Spring for a Cure. We raised nearly $19,000 that goes directly towards research for better medicines and a cure. Thank you, thank you, thank you!!

Tuesday, April 5, 2011

Awareness Video

I know, I have been super lazy on blog posts lately. Ben is still feeling under the weather and sportin’ a low-grade temperature so I don’t have much free time. But I’m hoping he’s rebounded by Thursday, in time for our play group at the park. In the mean time, I’ll keep you entertained with another CF awareness video from Team Asher.

Monday, April 4, 2011

Spring for a Cure

I haven’t had a chance to updated yet on Spring for a Cure because Ryan and I came home Saturday night to a VERY sick little boy. The good news is the illness has stayed out of his chest and is only a fever but it’s the highest fever he’s ever had and the longest he’s ever had one.

First the good stuff. Spring for a Cure was a blast and a complete success! Thank you to everyone that came out, bought a ticket, donated a prize and contributed to the night. 016

My mom “won” (she likes to say that but technically she did buy them!) some great baskets that were put together with so many great items. I even won a Vera Bradley bag from the raffle.

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I am already looking forward to next year. The wine was flowing, the food delicious and it was just great to catch up with everybody. We had nearly 20 of our friends and family attend!

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Sorry to keep this brief  but I have a hot little guy on my hands!

Friday, April 1, 2011

Sunshine

My lack of posts should show just how busy we are around here! We’ve made it through “birthday party season” in our play group and are on full cake/pizza overload. Since we meet our play group friends at Gymboree (which is grouped according to age) all the kids birthday’s fell with in six weeks of each other. We have had a blast though and are very thankful for such a wonderful group of friends.

The Spring for a Cure event is tomorrow and I am so looking forward to it. Thank you to all who have donated or purchased tickets, some even purchased tickets even though they are not able to attend. Your support is very much appreciated!

The weather has been nothing short of gorgeous so Ben and I have been outside at the park soaking up the rays. He is such a boy, throwing sand around and wanting to just run. While his amount of energy is sometimes overwhelming, I know that it means CF is not getting him down!

I’ll leave you with some fun pictures of our little boy trying to squeeze himself into our new shelving unit.

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