Tuesday, June 30, 2009

Eye appt and derm...

So we had her eye appointment and dermatologist appointment today. Her eye appt went great (considering it was first thing in the morning and she missed her morning nap again)... and they said everything checks out good. That's a relief. They did say that she has a clogged tear duct, so we are massage it daily. That won't be so bad. Horribly long appointment though... it lasted 2 hours! At least they warned us ahead of time though (unlike her last ENT appt that lasted 2-3 hours).

Her derm appt went great as well. Probably the fasted derm appt we've had. haha. She didnt get swabbed for tests again (for infection), her derm said she "smelled" great and wasnt concerned about infection anymore... so she's in the clear haha. She checked out her 'trunk' which is where the infection showed its face before and that was it. Quick in and out in a half hour. That was relieving. She told us to keep up with the diluted bleach baths... and to keep rotating between Nizoral shampoo and TSal shampoo. We just started the TSal shampoo last night but just the Nizoral alone was doing wonders for the build up on her head. Her hair is finally able to grow on the top of her head :) I also had the doctor confirm a spot on the back of her head. I noticed it when she was about 2 months old and figured it may have been a "hot spot" since she always lays on her back... but lately started suspecting its a birth mark. Sure enough, about a half dollar size birth mark (or stork bite, whichever you prefer lol) on the back of her head towards the bottom of her hairline/top of her neck. No big deal though :)

I've been stretching her physical therapy exercises out to last longer. She loves to lay on her side... especially her left side. Ive started to place this little play mirror of hers at the top of her head and she always stretches her neck out as far as she can to look into it. It's really kind of cute, if you ask me. She's also starting to try to roll over on her own, now that we've been showing her/helping her with her physical therapy exercises. And the really good news... she will do tummy time now!!! Only for like a minute at a time, but it's a start. and she's actually trying to lift her head off the ground finally. :)

Wednesday, June 24, 2009

Physical Therapy

Well, Physical Therapy this morning was kind of a nightmare. Andy came with because the appointment was early in the morning and Viv screamed almost the entire time. She's used to waking up with andy and getting her bandages done and then going back to sleep til about 11am. Instead, today, she had to wake up, get bandages done and go to an appointment. She was super crabby. So much for the "she loves physical therapy!" haha. so no more early morning physical therapy appointments lol

breakdown came early.

I would just like to say that no matter what the challenge with Viv... it's all worth it to me. YES I get way overwhelmed (who wouldn't with all these appointments), but she is my world. I often feel as though I don't get enough support from Andy, but I believe he doesn't fully understand the toll this all takes on me. I still feel as though I did something wrong during my pregnancy and that I did this to her, even though I've been told by each of her doctors many times that I didn't do this to her. I stay at home with her every day, I am her primary caregiver... so when she is screaming in pain, I feel I brought it on to her. When she has a new sore, I feel I gave it to her because her sores come from trauma to her skin and if I'm her caregiver and the only one with her... how else could she have had trauma to her skin? YES I lose sleep over this, not just because I feel I did this to her, but because of the guilt I feel I am tearing apart my relationship. Andy works so hard to support us with me not being to work. We are definitely struggling to make ends meet still, but in no way do I blame that on him. He works so much and wants to go out on weekends and has plans every weekend. I get incredibly upset over it. When do I get my time to go out? Sure I can go out with friends and bring Genevieve with... and I do... quite often, but for my piece of mind, I need time for myself without her so I can clear my thoughts for once without having to clear them through a breakdown (which even then doesnt clear them completely). When does Viv get quality time with her daddy? He works so hard, he deserves his time with his friends. But at the same time, what time do Viv and I get with him? He gets home from work at about 7 730. We eat, do her bath, he does her bandages, showers and goes to bed cuz by then its about 11pm. Then on weekends he comes home with that schedule then goes out til 2 or 3am. He normally works Saturdays too. Sundays are usually our only day with him. Am I not supposed to feel upset over that? I hate knowing my child prefers me over her dad. She needs her daddy. And I know it hurts him when she's screaming and he cant figure out what's wrong or how to make her feel better... then the second I take her she is fine. I have tried to tell him how I feel (politely and calmly), and it never gets through to him it seems. I have bitched many times about it and that doesn't help. What do I do at this point? Leave? Lay down and die (in a sense of continuing to feel as though I get no support with her and no life of my own outside of her)? I am so terrified of doing this on my own. I am not emotionally prepared for that with her skin. Every time they go to tell me that something else is wrong, or that she needs a new medication I literally zone out because I am already so stressed out and she doesnt deserve all these problems. I did the same thing in the hospital every time a doctor came to my room to talk about Viv. At least at the hospital Andy was there to listen to know what was wrong. Now, I just pick up the new meds and read the inserts as to whats going on when I get home. I am not a religious person by any means, but I know I wouldnt be given anything that I cannot handle. With that being said though, let me just say that I am at my breaking point, emotionally. For Genevieve, I will not give up. She is my world, my everything, and without her I'm nothing.

I guess my breakdown Thursday is a breakdown early Wednesday instead.

Monday, June 22, 2009

Test results are in!

Genevieve's dermatologist called us today. She has moderate growth of a staph infection. She asked how Genevieve seems to be feeling, and since she seems to be feeling better she told us to just keep using the anti-biotic ointment she prescribed her. If she appears to not feel well again, or breaks out horribly again we are to immediately call her. Otherwise we see her again on the 30th.

Genevieve has been a dream today. She smiled through her bandage change this morning even. She played on her floor gym for about a hour. Read some Dr. Suess with the puppy too. We laid on the floor this afternoon and did her physical therapy exercises, and she sat in her bumbo! That means her legs are starting to roll back in like they should be! She's now totally wiped out from the exercises and asleep in her swing.

Sunday, June 21, 2009

Happy Fathers Day!

Happy Fathers Day to all the wonderful Dad's out there.

Here's what we (me and viv) made for Andy...

Finished project :)

and now onto some updated pictures of her skin... these were taken this morning after a bath.

and just a reminder of how she looked at birth...

Saturday, June 20, 2009

Thursday, June 18, 2009

hanging out on the deck.

sitting up with only a little help.

She had just put her binkie back in her mouth. She's good with that thing. She can take it out of her mouth, set it down and pick it back up and put it back in her mouth :)

she's a pro at pulling her legs up

showing off her ability to blow bubbles now. :)

From two weeks ago, after her first Physical Therapy appointment. She was happy to be hanging out naked (or well naked to her) lol

Wednesday, June 17, 2009

where does the time go? where do the days go? Oh that's right.. to doctors appointments. at least this week. Monday we saw her pediatrician. Tuesday ears, nose and throat. Wednesday (today) physical therapy. Thursday dermatologist. I am exhausted and overwhelmed with appointments. only typical since tomorrow is thursday and i've already realized thursdays are my emotional breakdown day with all of it.

Physical therapy went great today. Her PT said theres a huge improvement in her neck strength. Still wont pick her head up up off the ground during tummy time, but all around neck/head control while sitting up has improved a great deal.

ENT went well as well. I like this new ENT doctor a lot more than the last. He was nicer to all of us, and his nurse was the sweetest to Genevieve.

I'm nervous for our derm appt tomorrow. It got pushed sooner than the 30th because her derm is concerned about a possible infection. We feel we are moving backwards with Viv's skin recently. She is breaking out with sores really bad in areas we have never seen sores on her (besides in the hospital). And her hands are blistering now (they never did before). So her derm will check out her skin and send in a few swabs to find out if there is an underlying infection somewhere.

I guess that's about it. I know I said Id post picture after the last post, and never did. But I will tonight some time. For now, I need a serious nap.

Monday, June 15, 2009

Well we can now add ear drops and amoxicillan to Genevieve's list of medications. Somehow she ruptured her ear drum. Andy woke me up this morning and told me to look at her ear... there was orangish green drainage all over and you couldnt see into her ear. I immediately called and got her into her pediatrician. We have to see an ears, nose and throat doctor again... but her ped was nice enough to give us another referral since I hated the last ENT doctor. She also really wants us to get into the ped's eye doctor because of swelling around Viv's eyes that hasn't gone away. She's concerned that the skin on the inside of her eyelids may be sloughing due to the skin disease. We also see her Ped again in 10 days as well as the appt on the 10th of July with her still. Will we ever get a break from problems and doctors appts? I'm starting to think we wont.

She hasnt been sleeping well lately for some reason. I blamed it on our move to the new apt, but I'm starting to think something else may be going on. She's only napping for about 15 minutes a day. Everyone keeps making comments about how she must be sleeping so well at night then... from exhaustion. But NOPE! my child is back to waking up 2-3 times a night.

I also had to call and pass a message onto her dermatologist asking if there is anything else, besides trauma, that can cause her skin to blister and slough off. I definitely feel as though we are moving backwards with her skin lately. Today we have both her legs completely bandaged and her trunk is bandaged. She has huge sores on her back again as well as her butt and legs. Her arms have tiny sores that we are just choosing not to bandage. She's almost completely wrapped again :( we havent seen sores (until the last week) on her back, since she was in the hospital. Her arms havent even really had sores in about 2 months. Nothing has changed though. We dont hold her any different. She's not moving much more than usual. I dont have any idea what it could be causing the new sores.

On a brighter note, I received a comment to another post of mine about Genevieve being nominated to the a featured baby on my babycenter birth board. That brightened my day. I'm not sure what it entails really but I'll find out soon. haha. Just to know that people think about us, made me smile. Those ladies (on my February 2009 birth board) have been so supportive and helpful through my pregnancy and since Viv has been born, I honestly don't know what I would do without them right now. So thank you, I know a lot of you check on us through my blog. :)

Fathers Day is this coming up weekend. I keep bugging Andy to try and get his family together at our apartments for a BBQ. Hopefully he listens to me. haha. I think on Saturday we are going to the Back to the 50's carshow at the fair grounds. I have no idea really. I left it up to him as to what he wants to do this weekend. He already got part of his gift, and with Genevieve being so fussy I cant really finish the other one yet haha.

And speaking of fussy... I must get going. I plan to post some pictures tonight so check back. :)

Wednesday, June 10, 2009

4 month check up.

So we just got home from Genevieve's 4 month check up. She is up to 13 pounds 3 ounces, and 25 inches long. That puts her in the 80 percentile for length!! Geez lady! haha. She'll take after her daddy, definitly (daddy is 6'1. i'm a short 5'2 haha)! Her ears look great. Everything looks good for the most part. I spoke my concern with her ENT doctor to her pediatrician and she gave us a new referral to try out. I also have to call and make an appt with a pediatrics optomitrist. We've noticed recently that her left eye 'squints'. It's not as alert and bright as the right eye. She has also had major brownish-orange eye boogers for as long as I can remember... she has eye drops for it, but I'll be honest, I've never used them. The eye boogers come and go, so I've never found a huge need for the drops. Her pediatrician is concerned about her eyes though, not just because my family has history of eye problems, but also with her skin disease. She is worried about sloughing of the skin around the eye. Genevieve's eyes often tend to swell on the top lid or just underneath the eye. So I'll call and make that appt either today or tomorrow for next week. She was also given a prescription for prilosec for her reflux, however I guess our insurance doesnt cover it. So I have to wait a few days and then call the pharmacy, they are going to call our insurance and get it all figured out and if they still wont cover it, her pediatrician will pick a different reflux med for her. So now for prescriptions she has eye drops (even tho i dont use them), albuteral through a nebulizer, yeast cream, a strong anti biotic ointment, regular regimen of Tylenol, and soon to be reflux meds. And there is discussion of tubes for her ears at some point as well.

Today was the worst her pediatrician has ever seen her skin. She's never seen her body fully wrapped. It's always been legs and maybe an arm. But today, both legs, and her chest/torso/trunk are wrapped. I feel we are moving backwards with her skin lately. And theres nothing that has changed to be making her skin break out so bad. I dont know what it is. =/

As of recently, it's been decided by me and andy that I need to start taking my zoloft that was prescribed for me while I was pregnant. I took it for a little while I was pregnant and it always gave me a 'high' feeling and I hated it. I have a history of depression from my teenage years and it was a concern about post partum depression. When Viv was born I was on such an "emotional" high that I didnt have time to really settle down and let her skin problems sink in. Well now that things have slowed down, everything is closing in. And it's causing a lot of stress, and fighting between andy and I. We will not fight in front of Viv. But she can tell things are not good. Ive noticed the change in her eating. I've noticed the change in her sleeping. So I will try the zoloft again. Hopefully it helps with this 'funk' im stuck in.

We tried out Genevieve's jumperoo last night. Oh man. Haha. She screamed bloody murder putting her in it. It took about 2 minutes of praising her for her to stop crying and then she just stood there in it. haha. She didnt know what to think or do. So I showed her how to play with one of the toys and she kept playing with it and watching the lights on the front. It will take some time but I'm hoping she will like it. She has such great leg strength that I really think she will like bouncing in it. Her little arms barely reach over the top of the seat part of it though haha.

I just put Genevieve down for a nap. So I think I am going to go take on the same idea and curl up with my puppy for a cat nap. Thanks for all the support, I really do appreciate it.

Edit: I meant to add this before.. her next appointments...
Pediatrician: July 10th (to check on her development again) and then August 10th (6 month checkup)
Derm: June 30th
ENT: September 10th
Physical Therapy: June 17th, 24th and July 1st. (maybe one before then as well if a spot opens up in her schedule)

Monday, June 8, 2009

picture overload.

Oh what a bad day. At this moment, I am sitting here listening to a blood curdling cry out of my little girl. Andy is doing her bandages. It's been a rough few days for her little feet. For some reason the blisters are never ending. Today a blister popped on one foot and had so much wound fluid that it soaked through her bandages and through her sleeper. the other foot she had a bad blister between her toes and on the bottom of one toe. We are still waiting for her neck to heal up with rawness. Good days and bad days there. Her armpits are still pretty raw as well. The only problem we have with her arms is they tend to dry out really fast and crack and then will bleed. It was just discovered that she has two HUGE (like half dollar size) spots on her back where the skin has peeled off and is raw. Poor little girl. I did take new pictures of her skin tonight, I'll attach them at the bottom.

As for an update since the last time I wrote. Genevieve has been diagnosed with Reactive Airway Disease, and from my understanding it is much like asthma. She gets albuteral through a nebulizer every 4 hours or so. She also gets eyedrops 3 times a day for some nasty eye boogers shes had recently (like brownish-orange eye boogers). She is now in physical therapy. For a bit she didnt seem like she was able to turn her head to the right. She has PT every week for now. She really seems to enjoy PT. She laughs and smiles and talks to her physical therapist and never fusses. She was also seen by an ears, nose and throat doctor for her reactive airway disease and also for some fluid in one ear. She has to be seen by the ENT doctor every 3 months to have her ears cleaned out. This doctor is a whole 'nother story from her PT. He has one more chance and if he talks to me the same way as before then we will be finding a new doctor. He spoke to me like I was an idiot. He spoke to Andy like a doctor should. But anytime I asked a question or spoke, he looked at me like I was an idiot and wasting his time. This had to of been the hardest appt for me to go to. She screamed bloody murder the whole time. And seeing him stick a flashlight dealy up her nose and then the after sores on her forehead (from him holding her head so hard to clean her ears) just broke my heart. I am not looking forward to that next appt. :(

She has her 4 month check up on Wednesday. I'm excited to see what she's at for weight and height. I'm estimating at least 13 pounds. We will see though! I'll update then.

her poor little foot tonight...

other foot...

her chest and arms (after her legs were wrapped already)

her little hand (and her beautiful blue eye haha)

this is her "mama help me, i dont like this" face... i see it everytime i calm her down when she's screaming during bandages...

and we will end with a happy picture of Genevieve...