Thursday, June 25, 2015

Hello Summer!

Yay, it's summer! Too bad I am not a teacher, I would love to be off. But I can't complain since I do three 12 hours shifts that leaves room to have plenty of fun. We took a mini vacation in May to Great Wolf Lodge for C's birthday. It was a blast! We may take a trip to NJ shore for a few days in July but our main vacation will be Disney in September! My mom surprised us with a stay at the Animal Kingdom Villa with the whole family. C and I are very excited and can't wait for Reese to enjoy the happiest place on earth. 

Reese is doing very well. Her progress lately is unbelievable. She is starting to enjoy the park/playgrounds; actually going on the equipment (swings only with me). But that is so BIG for her. She does stairs now without melting down. She is starting to consistently babble and has a few words. She says up, bubble, and signs milk, more, all done, up, and music. We got EI to give speech therapy every 14 days. It's frustrating because she could use it once a week now that she wants to talk. Her engagement and mimicking are so much better! She still gets OT and SI which helps a lot. We are BUSY 5 - 6 therapy sessions a week. Daycare twice a week and she has swim Saturday mornings! All of that has led to her success :)! Here are some pictures from the last month:

Memorial Day 2015


Great Wolf Lodge for C's bday

Fashionista waiting at Theraplay

Reese loves her bike

First time on the slide without a meltdown; at daycare with her Special Instructor

Coloring at daycare

Sitting on a swing with mommy!

Philly Pride 2015

It was so hot!

Cooling off in the fountain

Walk with mommy


She started using the playground equipment this week!

Saturday, May 16, 2015

Moving forward

My life feels like it is stuck in fast forward these last few months. Ever since Reese's "issues" started our life has changed. In the very beginning I, of course thought the worst. I was taken over by the "mom guilt." While I can't say it's necessarily getting easier.... it's becoming more managable. Reese's delays are still there and they could possibly always be there. Only time will tell. The devastating part of all of this is the unknown. We have no idea what we are dealing with. The endless questions you ask yourself... Will she ever talk? Will she ever play like a normal kid? We see the developmental Pediatrician May 28th, I am hopeful for answers. I am dealing with so manys different feelings lately.

I am tired. Parenting is already exhausting. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep (which I rarely do), or have had some time off, there is a level of physical and emotional tiredness that is always there. Doctors' visits are not just a few times a year, they may be a few times a month. Therapies almost daily. Paperwork and bills stack up. It's never ending... or so it feels.

I am jealous. It's hard to admit, but it's true. When I see a baby do what my daughter can't, I feel a pang of jealousy. It hurts when I see my daughter struggling so hard to learn to do something that comes naturally to a typical kid, like climbing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Reese, "It's not fair."

I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag. Good for them, but it's so not what my world looks like. It's been a sanity saver to connect with other special needs moms.

I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and optimal treatment time has passed.

I am human. I have been challenged and pushed too far while raising my daughter so far. I've grown as a person, and developed a kinder heart and empathy for others in a way I never would have without her. But I'm just like the next mom in some ways. Sometimes I get cranky, my daughter irritates me, and sometimes I just want to run away. Sometimes it's nice to escape and talk about other things. And if it seems that my life is all I talk about sometimes, it's because it can be hard to talk about my daughter.

I want to talk about my daughter but it's hard to talk about my daughter. Reese is the most amazing thing to happen in my life. Some days I want to shout because of how sassy, funny and cute she is, or how she accomplished somehting new. When I'm having a rough day, I might not say much, I may just cry. But it doesn't mean that I don't want to learn how to share our life with others. It's very hard to deal with people saying, "She may just be learning at her own pace, she'll get out of it. She's fine." or "She still so young, relax." They are right she still is so young (1.5 years old). But that doesn't mean it's ok not to do the things she should be. I understand their intensions, they are trying to console me. But in doing so they are making me feel so defeated. One thing I always appreciate is whenever people ask me a more specific question about my daughter, like "How does Reese like daycare?" or "How's Reese's sign language coming along?" rather than a more generalized "How's Reese?" which can make me feel so overwhelmed that I usually just respond, "Good."

At the end of the day Chris and I are doing the best we can for our daughter and that's all that matters. Reese is making slow progress with therapy and daycare. We are taking one day at a time.

Saturday, April 4, 2015


Reesie girl is doing great! Since the last post we have made slow progress with several things. I had to fight like hell with my daughter's pediatrician to get Reese the help she needs. We are on the waiting list to see a developmental pediatrician. Can be up to 6 months!!!! And in the mean time I am switching her pediatrician. Chris and I are not happy with the one we have. Don't get me wrong she is a fantastic doctor but just not personable enough. I feel like we went through the same thing in pregnancy (switching from MD to widwife). The practice we are looking into was recommended to us by Early Intervention. The doctors are supposedly more developmentally focused and more personal with families. Just what we need! I think we are heading towards the direction of the diagnosis of a Sensory Processing Disorder.

I also had to push a bit to get OT on board with Reese. Not so much from the outpatient theraplay but from EI. Reese now sees Speech and OT at Theraplay. EI sent out an OT consult and she will visit once more in April and we will re-assess in May with our whole EI team. Her EI special instructor is growing on me a bit. I think rather than just tell me what to do now she knows I need her to show me etc.

Speech wise she is babbling so much more! She also waves bye bye now and does "SO BIG." Yay for progress.

Another thing I guess I never realized was that Reese barely crawled as a baby. Which has now shed some light to why she may have depth perception issues along with low muscle tone in her hips and mid section. Also, not helping with her reflux. Her reflux got better for a little while so we took her off medication. But now that she is not sleeping at night it occurred to me that this might be why. So I tried Maalox last night, and she slept a little better than usual. I will approach restarting meds with the new pediatrician. But tone wise for now Chris and I will try to build her core strength with baby play sit ups and climb exercises. I think PT will be in her future but I am so not ready to start that, especially because she is ambulating fine for now.

The tantrums have become manageable and a little less frequent. We are also starting her in a daycare for socialization this Tuesday. I am so nervous how she will cope. Hell I am nervous how I will cope lol. But Chris and I think she needs it. It may even help her flourish.

Here are some pictures are recent adventures:

She obviously LOVED him!


She loves her swim class!

Tuesday, March 17, 2015

A new low for me

It has been a while since I have written on here. Life has been a little hectic to say the least. Since the new year we have been so busy with appointments for Reese and I.

Update on our little miss Reese:

Since about ten months old I noticed she had been pulling at her ears more and more and the pediatrician saw fluid on both ears. That in combination with a speech delay sent us to get her hearing tested. She had some mild hearing loss. So we saw an ENT doctor and she had ear tubes placed a week ago.  The procedure was a bit rough for Reese, she ended up with an IV and a breathing tube which is not usual. But she was still able to go home the same day. That whole process took a few months. Before the tubes were placed we got Reese involved with Theraplay and Early Intervention for speech. She hasn't made much progress. Which leads me to think the ears weren't her only problem. I guess I have been blind to some other symptoms until the last few weeks. Her communication is very weak. She does not say any words, she does not wave or point. She has complete temper tantrums (more than your average toddler). Reese also struggles with severe anxiety surrounding separation from me, crowds or public places. I am really starting to think she is on the Autism Spectrum. She will flap her arms with stress, rock from one foot to the other at times, spin in circles, walk with her chest out and head held high, swing her arms back and forth and turn her head side to side. At times I can't get her attention and she is in her own world. Shorty after she was born I remember the doctor being concerned about her head circumference. She kept measuring a bit big. So we would have to keep going back and having it rechecked, until we eventually got a head ultrasound which was normal. After the "normal head ultrasound" I pretty much stopped worrying about it. But now I feel so so so stupid for that. Because they had in her chart this whole time the diagnosis of "Macrocephaly." I never even thought of that alone potentially causing a problem for Reese, especially after a normal HUS. How could I not think this was a problem? I am a nurse, I should know these things. I did have plenty of people telling me not to worry and that Reese was fine.... but I should have known otherwise. Did I miss other delays she has? I still feel very alone in this whole thing. Most people I talk to tell me I am over thinking things. I haven't talked to many people about it, basically only my wife and mom. I don't want to label Reese, and I don't want to advertise this. But I know now I am not over thinking things. I've spent the last two days pretty much a crying mess. I feel terrible, like I got punched in the gut. To think that my precious baby is trapped inside of her head, that kills me. It feels almost like a grieving process. I don't want to sounds ungrateful or pitiful. I will love her no matter what. But I feel terrible guilt. Did I do something wrong? Did the IVF cause this? Did something happen in pregnancy or delivery? Is she lacking something I could've given her? Can I handle this? These are the things that make question God... Why?

I am scared shitless. I don't know what her future holds. Autism has a very wide array of functions. Will she be high function? I am hopeful. I want to do anything and everything I need to do in order to get her the best possible treatment. And by treatment I mean intervention, because Autism is one of those very misunderstood and untreatable diagnosis'. Yes, I am freaking out.. can you tell? I do need people to tell me I am doing everything I can, like my daughter's EI teacher did this morning. I just hope I can get out of this funk, because it is certainly not going to help my situation. We are making changes, swim class (she loves it), gymnastics (which she hates but we may change it to something else), limiting TV if she gets it at all (she gets sucked in), trying to get her to play with us rather than by herself,  etc. It's a start. We have also talked about daycare for her development.

But my BEAUTIFUL baby girl is doing awesome, she is healthy and smart and that's all that really matters to me. She has so much love for those close to her and Chris and I love her to pieces. She is our everything and nothing will change that. She is literally still attached to breast feeding but we are weaning to 1 to 2 times a day.

Aside from all of that our family as a whole is doing pretty well. I am still having issues with my heart. I went to see a new cardiologist yesterday and he referred me to a electrophysiologist that will do an AFIB ablation. So that may be in my near future. My biggest issue is that I am overweight and I want to exercise but every time I try my heart goes into irregular rhythms. No medications have helped... so we shall see. I think it's all about risks versus benefits.... like life itself lol.

Here are some updated pictures :)

She loves my turkey meatballs

 Right before her tubes

On the way homes from her tubes, she threw up right after that lol

At the local park yesterday

At gymnastics today

Friday, January 2, 2015

13 months old, wow!

I can't believe the little baby that grew inside of me is now a big bad one year old. She is such a ball of fire. She brightens my day, I think we will keep her. 

She is still nursing, twice a day and weaning. 

Most recently she had a GI Bug on Christmas! It was rough but we got through it. She didn't understand the whole Christmas thing anyway. But I will post those pictures another post. She is non stop on the move. And definitely trying to break rules lol. Here are some pictures of our TODDLER!