It's been a while!

Hello there, I can't believe it's been 3 months! Where should I even begin?

February- We lost a dear friend in my crunchy mommy community. It's still very hard to believe she is gone. I saw her a few days before at a cloth diaper playdate, before she had the stroke. Her sons name is also Andrew. We miss you Susan! :(

March- Andrew's pins came out, he did good. He was on hands and knees just a few days after the surgery... my crazy little boy. We went back for his post op and things were looking good. Our next appointment is in a year. Hoping everything keeps developing correctly.

April- My mom was here for a couple of weeks. She was able to spend Easter with us. It went by too fast. We also had lots of 1st birthday parties to attend, it was fun! I have met lots of moms and babies through playdates and mom groups. Andrew finally got his 2 top teeth at around 16 or 17 months. He also knows how to sit up by himself.

We got offered free Kindermusik classes. I really like them, more than Gymboree. The instructor Holly is amazing. Andrew has such a good time there, it is so good for him too. We got offered the scholarship again for the summer semester. I'm excited, can't wait to start again :)

May- Andrew turned 18 months (1.5 years). He also recently started crawling a bit. I'm so proud of him! His preferred method of transportation is still rolling though...lazy kid! He still receives physical and speech therapy. He likes pulling up on things, so far only into kneeling position. But at least he puts weight when in standing position now. Slow progress, but we are getting there.

We still have feeding issues. He doesn't eat much solids and won't eat real food yet. He weighs around 17 lbs right now. According to a blood allergy test he is allergic to walnuts, peanuts, wheat, eggs and dog dander. I still think he has a dairy sensitivity. Ever since I limited dairy to only that in the Pediasmart, he isn't as itchy. He gets a bit of hemp milk and coconut milk yogurt, both diary free.

We are finally starting occupational therapy this week, we'll see how that goes. We also went to see an urologist yesterday. The bad news is that he will need yet another surgery. His testicles never descended and at this point, they aren't coming down on their own. I just need to schedule it :(

It seems like things have been hard again. Andrew has been extra cranky lately. I did notice that one of his molars is starting to break through, so maybe that explains the crankiness? I just want a vacation. I feel like I'm tired all the time. His sleeping is random, some good nights (still waking up to eat) and some bad nights.

Anyway, I think that's basically whats been going on around here. Mike's latest hobby is playing with his new synthesizer and learning about music. Lily lost her winter coat and has fleas. And I've actually been reading again, crafting here and there. I'll try not to disappear for so long! Find me on Instagram, we android users finally have it :)

Top Ten

Here are 10 of my favorite baby products. I don't like clutter and "stuff", and even if I did, we don't have room for it. We tried to get away with as little as possible. We never bought a baby swing because they take out so much space. We also never had an infant car seat, just a convertible.

In the first months, we did without a pack and play, baby monitor and stroller. Because of his hip dysplasia, we eventually bought both. My dad also bought me a monitor when he came to visit. The pack and play is now stored again. I also now have a stroller I LOVE. Anyway, here are my top ten, in no specific order.

                      

1. Smartphone: I can not imagine surviving the long nights and breastfeeding without one. Also, having an easy way to take a picture and share it online right away. Now that I track how much Andrew eats, poops, meds, etc. Baby ESP is a great app. 2. SwaddleMe: Andrew liked being swaddled, he slept better. These worked out great even when he was in the spica cast and the rhino hip brace, we only swaddled his upper body then. 3. Bumgenius Cloth Diapers: My favorite type of cloth diaper so far. 4. Boppy Pillow: great for breastfeeding. He also liked sleeping in it, with a blanket over it when he was in the spica cast. 5. Baby ComfyNose: The concept may seem gross to some, but you will quickly get over it once you see how great it works. I use it a lot! So worth it. 6. Ergo Performance: I couldn't decide which carrier to choose because I'm really loving the Boba now too. It took a while for Andrew to like the Ergo, but now he is totally fine in both. Super must have!

7. Marpac White Noise Generator: I wish we would have gotten this sooner. At first we were using a cell phone app, but I noticed the sound loop, which was super annoying. While the Marpac is not visually pretty,  it works very well. Combine with #2 and bam! Hopefully these 2 little gadgets will help your baby sleep better. 8. Fisher Price Rocker: I thought this was a good alternative to a baby swing. This is another thing Andrew slept in when he had his surgeries. It's lightweight, so it can be easily moved from one room to another. We keep this in the kitchen. I put him in this when I need to take a shower, I just bring it to where I can see him. 9. Activity Gym: This is the only "big" toy we had, it was a gift. He really enjoyed it. I recently packed it away. He fell asleep while playing in it many times. 10. Bumbo: Because of Andrew's special needs, this was the only thing I could use to get him in a sitting position (when he wasn't in the cast or brace). We keep this in our car now, to use when we eat out, since he can't really sit in their high chairs. 

Others items that I also like and didn't make it to the top ten are: Boon Grass Drying rack, waterproof crib pads, baby monitor and night lights. I hope this is useful to someone :)

Let's Catch up!

We had a quiet Christmas just the three of us, grandma was sick. Here's a cute picture since I haven't update my blog since then. It felt like Andrew's first Christmas to us :)

Andrew is sitting for longer periods of time now, but he still doesn't catch himself when he falls. We are working on it. The helmet is off! He outgrew it. I don't really see a big difference, which is disappointing. He is just developing very slowly, so he didn't progress much.

We had a few months of bad spitting up and vomiting. His GI put him on Zantac for now and it has really helped. No more vomiting. He's having an upper gi done next week, so we can see if there is anything going on. We also went to a really nice ENT. I'm trying a nasal spray for the congestion he always has. He also has fluid in his ears, we might look into getting tubes.

His surgery for the pin removal from his hip is scheduled for March 9th. I'm nervous and anxious. I hope the recovery is easy and that he isn't in too much pain. I'm mostly afraid of the news they might give us on how his hips are doing. I'm praying for good news.

His first tooth finally broke through this week! At almost 15 months old. Also, thanks to GetPumped, I have enough breastmilk to give Andrew for a few weeks. He also eats a bit of oatmeal in the mornings with pureed fruits and veggies. I also started giving him PediaSmart. He is still not interested in real food.

Mike moved to a cool new office. They have a whole building to themselves. They also grill almost everyday for lunch, so lucky! The bad thing about the new office is having just one car. I drop him off in the morning if I need the car that day. He is also very much into video games lately...oh and politics :S

I finally have more mommy friends and regular playdates, which makes me very happy! I've been having a few Etsy sales lately. I want to introduce prints of my paintings soon. I've also been making flower felt hair clips, but haven't had time to add them to my shop. I recently cut my hair the shortest I've ever had it. I had to buy an iron, because I don't like the way my curls are behaving. 

I will try to update more often so my posts aren't super long. I also need to take more pictures with my "big" camera. Speaking of photos, there are A LOT of mommy photographers around. I would like to take photos of events or parties. I took some of our babywearing anniversary playdate and everyone loved them. Hopefully I'll have the chance to do it more often, maybe for a small fee? 

(Almost) One Year

I honestly can not say this last year has been the happiest year of my life. It sucks, yes, but that's just how it is. I'm learning to throw all my expectations, along with baby milestones out the window. I'm in a better place right now than what I was even just a few months ago. I'm glad I started going to therapy because that is what is helping me discover all this.

I still get stressed out and angry, but it's different now. I feel like I handle it better. I'm finally feeling happy again and my sweet baby boy seems better too. I still stress about his weight and throwing up, but overall we are all in such a better and happier place in our lives right now, and that gives me hope. 

Last year he has been through a pavlik harness, rhino brace, 2 spica casts, physical therapy, speech therapy, starband helmet and the rhino brace at night. He has also seen an orthopedic, geneticist, dermatologist, ophthalmologist, neurosurgeon, cardiologist, gastrointestinal and his regular pediatrician of course. What's next? I'm not sure.

I know that with his condition, we might run into more hospital stays or medical interventions. But right now, today, I feel hopeful, that everything will eventually get better. I'm learning to accept that this is our "normal". So even though it hasn't been the happiest year of my life, he really does make me happy, he is an awesome, tough, sweet little guy. We will just take it day by day and enjoy even the smallest of achievements. 

Thank you Gina for sharing this quote with me.

The Bad

It seems like after the spica cast came off, things got hard again. My mom had to leave a few weeks earlier than planned because my step dad had surgery. At least my mom was still here when the cast came off and a few days after. Andrew's eczema got really bad again. He's skin didn't actually look so bad, but he would not stop scratching ALL DAY LONG.

He started hating bath time again and diaper changes were once again a challenge (he was probably still hurting a bit and just wanted to scratch!) I think I even started to get depressed. I was so frustrated and every little thing made me very angry. I hated myself for feeling that way, especially because it wasn't Andrew's fault. I took him to the pediatrician, and until the second time I went back for the same issue, I finally got the referral to the dermatologist.

Dermatologist said I had to give him a bath every single day. I stressed out immediately since it was just so hard to give him a bath. She also gave me samples of Cetaphil Restoraderm body wash and lotion and a prescription for an ointment. I also bought him a hazel wood necklace that's supposed to help with eczema and constipation. It was worth a try.

His itching improved so much after just the daily baths and the Cetaphil products. The first few times were hard as usual. He is finally calming down, but I still need Mike's help. Even though his skin had improved without the medicated ointment, when the pharmacy finally had it for me, I went ahead and started using it. Now I stopped using it again, see how he does without it. So far he seems fine :)

Around that time when his itching was out of control, I was feeling desperate for help and made an appointment to start counseling. Even though I feel more relaxed now, I'm still going. I know it will help me. I feel like I'm still grieving the loss of having a "normal" healthy baby. I thought I would be over it by now. Sometimes I can't sleep thinking about him and get so sad and angry, I just don't understand why :(

He had his geneticist appointment this week. I usually look forward to it since she's the only one that asks us lot's of questions and knows more about his condition. She thinks he is doing great except for his physical developments. So, we left overwhelmed and with lot's of prescriptions for more specialists. She thinks he needs occupational therapy for his hand use and speech therapy to help with feeding.

He also needs a hearing and vision test, along with an xray of his wrists, a renal ultrasound and an echo cardiogram. I'm terrified, scared of finding out something bad after he gets these things done. I feel like I just can't handle more issues. It probably sounds extremely selfish of me but, I feel so jealous of other moms that don't have to worry about all these things.

We couldn't decide what to do about the helmet situation since the insurance still doesn't want to pay for it. His pediatrician thinks his head will eventually fix itself, especially once he starts rolling and moving more, which he still can't really do because of the brace. The geneticist feels like he really needs it and now is the time to do it. So, we go back this Monday to finally have it made, it's going to suck :(

(All cell phone pics this time)

6 Months

Lots of things to update on, mostly on how Andrew is doing. He turned 6 months old on May 13th. We had our geneticist appointment last month and she was surprised on how well he is doing. I guess I haven't mentioned it on here but, Andrew has a chromosomal abnormality. It is rare, so we don't know exactly how it will affect him. The problems he has are most likely because of this. More specifically, he has a translocation; he is missing part of chromosome 21q and has an extra part of chromosome 10q. 

He is still a small baby and is a little developmentally delayed in his motor skills. The geneticist also noticed he had torticollis, and because of this, his head is flat on one side. She referred us to a Pediatric Neurosurgeon. The geneticist also told us about Early Steps, which is a program for kids with special needs or who are developmentally delayed. We are going to get free physical therapy through them and the best part is that they come to our house and do the therapies :)

I took Andrew to the Neurosurgeon and he does think he needs a helmet to "fix" the flatness in his head (positional plagiocephaly). Right now we're just waiting to hear back from the helmet place and see if our insurance is going to cover it. His hip surgery is scheduled for June 3rd, a week from today :( 

My mom arrived here on Tuesday, she will be staying with us to help us out while Andrew is in the spica cast. And my dad, who I haven't seen in 6 years, is coming to meet the baby! He gets here Sunday night and is staying for just a few days, I'm very happy and excited. I was thinking of going to Disney World with my parents and the baby next week, I hope it's not too much for the baby, we'll see...

In other not so medical news, my sweet baby is doing good, no more crying non stop, and until recently, he finally stopped fighting bath time, we are still dealing with his eczema though. He makes lots of cute little noises, he is very curious and looks at everything. He loves playing under his little gym. He rolls from his back to tummy and tummy to back. The only thing we still have a hard time with is tummy time, he doesn't really try to push himself up, he just lays there and then cries when he's had enough. we have tried different things and no luck. We will be working on this when his therapy starts, which should be soon.

I'm still trying to get him used to being worn on the ergo carrier, he tolerates it sometimes for short periods of time. I really want to try other carriers, like a Baby Hawk or a Pikkolo. I also started using cloth diapers part time. I bought some gDiapers for now, but I think I want another kind of cloth diapers. He can't use cloth while in the cast, but I want to start using cloth more after it comes off. Well, that's it for now. All pictures were taken on his 6 month birthday, don't you just love that crazy hair!?