for our rainbow groups catch up Xx

[xoxo4angel]

Laura ~ Sorry your Mom was in the hospital, but relieved it was a short visit. Ohh I hope this is it for Simon's meds---it's tough to get anything done when they are clingy.

Amy ~ How was your visit with your folks?

Jess ~ I bet the girls are ready for summer! Were they able to stay in the same private school?

Thanks for the well wishes for my nephew. If he remains stable they will perform the necessary surgeries. My brother and SIL have a 5 1/2 year old daughter, she is staying with my sister in NC for a few weeks.

As for Pierce:
Dear Mr Sandman, if you are going to insist on Pierce waking at 6am can you PLEASE make him less moody? Or just let him sleep until 7am?!? Is this too much to ask? I've attached a picture so you can see Dr Jekyll and Mr Hyde (pic 1 is his new "smile" pic 2 is the tantrum that ensued AFTER smiling).

Desperately seeking asylum,
Pierce's Mom

 

[xoxo4angel]

PS ^^^This seriously just happened ^^^

 

[mommylov]

Oh no Angel hahah... I do have to say though that he is stinking cute in both pics. Mr Sandman, do as your told!

 

[lilesMom]

Amy eeg confirmed focal seizures
They went bananas for a bit.
He was getting them constantly again.
So more raises.
Hopefully it does the trick :-D

Angel something in the air
S beendoing the same
Teething hard at d mo.
He wakes playing, then is so tired,and doesn't know,what's wrong
He was normal time this morn
Thank God
Kisses fir David. X

Love to all.Xx

Jess how r u and d girls? Xx

Bethany Hope ye got sorted Xx

 

[aaronswoman79]

Hi, ladies. The girls are doing good, nice and healthy! But little Sophia has been a handful. Her molar is finally almost out. There is blood and bruising around the tooth. The poor baby goes through hell just to cut 1 tooth. And she has been refusing to eat much because of all of the teething pain. I tried to softly massage her jaw area from the outside of her cheek, but even that caused her pain. I am thinking about making a dental appointment at least for some advice about her teething pain and also so the dentist can take a look at her teeth and see if everything is alright. It takes months for one tooth to come out and it gives her so much pain. Hmm what else. Ah, her hair is growing much longer but its so much thinner than Natalie's was, so its hard to put any hair accessories. Her hair is fine and any pulling makes her scalp turn red, so I rarely do anything with her hair. Cant wait until it gets thicker and I can do more. She also has quite a few bruises on her legs from all the climbing and wild behavior lol.

Natalie is doing great in school, such an intelligent little lady. She seems to be gifted musically. She is in band and can learn to play different instruments amazingly quickly, even shocks and impresses the music teacher. Btw, I found out from her teacher that she has a crush on a boy in her class (too shy to admit it to us). She is only 9 so thankfully I wont have to worry about boyfriends any time soon.

Alyssa is doing fine, her and Natalie still go to the same school. She is going through what I believe to be her last growth spurt! She is mad about it of course! Says she is too tall. But we keep telling her she is perfect and to embrace her tall stature. I think she is just perfect and beautiful. I keep telling her the smaller boys will eventually catch up and be much taller, most of her issue is she doesn't like being taller than some of the boys at school.

Afm, I am just getting over a bad case of bronchitis and possible mild pneumonia. It was very difficult, I was basically bed-ridden for almost 2 weeks! I started out with sinusitis which eventually went into my chest and lungs. I am still left with some asthma.

Forgot to mention, Sophia has been showing signs of sensory issues. Food textures, taste, can barely be cuddled, kissed, doesn't like her hair brushed, cant handle the feeling of socks many shoes and certain clothing, cant touch sand or grass (seems terrified and almost seems in pain when she gets near it). And the list of symptoms goes on. I will def talk to her pediatrician. Might just be mild issues that she will grow out of or might need eventual therapy. Either way I am definitely going to talk to her doc just to be on the safe side.

 

[aaronswoman79]

Laura, have the docs said that the epilepsy could subside once Simon gets older? It must be scary to witness the seizures, especially the ones that last longer. What do u do (or are suppose to do) when Simon gets a seizure? Sorry if the question seems a little stupid. I am sure there are extra precautions to take, correct? Does Simon still sleep in the bed with you? Wish there was a magic medicine that could just stop the seizures all together. How is your mother doing after her last hospital stay. Did they find the cause to her heart issue? Prescribe new meds? I hope she gets better hon.

 

[aaronswoman79]

Angel, Pierce is so so adorable. I just love his new smile. It looks like a tough boy smile, absolutely gorgeous little boy. His tantrum face is still adorable, reminds me of the faces Sophia makes when mad. They can be so dramatic..hehe. How is baby David (btw I adore the name David) doing? Your little nephew is truly a miracle and he has an amazing heart and spirit. I hope and pray he continues to grow stronger and stronger each day. I also am hoping the docs come out with the best and most beneficial plan for David's future care.

 

[aaronswoman79]

3 weeks Amy!! U already got your af and things are happening so quickly. I hope your spirits are up and u stay far far away from cz! June is just around the corner. Yay for possible twins!! So excited for u hon.

 

[mommylov]

Jess, Im glad to hear all the positive things happening with your girls!!! But sorry to hear about poor Sophia and her teething ALso hope that you are able to get some answers regarding her lack of affection. Did you mention something about your DH kind of being like that? Do you think she is getting it from him?

Angel, any more updates on your nephew?

Laura, how is Simon doing on his new dosage of meds? Hope things are stabilizing now hun.

Bethany, how are you doing? Ive been thinking about you and your DH and hoping that things are getting better with regards to the job front.

Leslie, hope you are getting some rest and enjoying having the girls home!

Happy Friday to everyone and hope you all have a great weekend!

 

[lilesMom]

In a rush
Caught up nut duty calls.
Proper reply later xxx

 

[aaronswoman79]

Amy, u are right about my dh not being affectionate and it had caused quite a bit of emotional suffering for me. It also hurts when Sophia doesn't return my affections. But my dh grew up without love from his parents so I am sure this affected him, hence the lack of affection. But I'm not sure if he was like this as a baby or made to be like this because of his cold upbringing. With Sophia its not just lack of being affectionate, its a bunch of other things also. For instance, sometimes u touch her lightly and she acts like she is in pain almost like u hit her and she just seems incredibly sensitive. Could be just the way she is. But I have a hunch she has some sensory overload. We will see what the doc says. How u doing today hon?

 

[mommylov]

Oh I see...I hope it isnt something more serious and that the dr can pin point what it might be

Im doing ok.. just the usual, nothing really new. Atleast not more than you guys probably already know from my journal lol. I havent seen CZ today which is nice

 

[xoxo4angel]

I tried posting earlier but it didn't go through *whomp whomp* In a nutshell:

Jess ~ Glad the girls are doing well in school. Can't believe Natalie has a crush, too sweet! I hope the Dr can quickly discern what is going on with Sophia...sensory issues can be difficult to manage. The bruises on the legs are all too familiar, Pierce looks beat up! I'm glad you are on the mend, what a nasty spell you went through!

Laura ~ I'm glad the EEG came back, I really hope Prince Milky is back to his normal self soon. Thinking of you and your Mom.

Amy ~ I need to read your journal...keep meaning to bookmark it for easier access, but my allergies keep my head in the fog! Love the weather, dislike the pollen!

Baby David is still going. I'm a bit peeved at my SIL because she isn't smart enough (I can't say with certainty, but I suspect she has a low IQ) to ask "why." She just accepts a Dr's word as the authority without question. She should ask: Why are we waiting to do the surgery? Why did you have to give him a blood transfusion? Oh they took too much blood? Well, WHO is keeping up with who takes what from him?? Why are you keeping him intubated? It's just frustrating to talk to her because I am left with more questions than answers. I have to have faith these Docs are looking out for him.

Ok, posting this now ttyl!

 

[aaronswoman79]

Is your SIL developmentally disabled Angel? Is it that she doesn't understand what is going on? I think just like u hon. I am always trying to be on top of things. I mean the mother needs to know exactly what is going on. She is going to be David's best advocate for now on. She just cant be oblivious to things. I do understand that she is in the post-partum period so maybe she is in a bit of a mental fog. Is there anyway u can make it over to the hospital to find out exactly what is going on? And what procedures have they done and are planning to do in the near future? I do know that his heart defect is a very serious condition to have so I totally understand your worrying about David getting the best care.

 

[xoxo4angel]

I have never got a clear answer from her regarding her condition. She told me she was learning disabled. I often wonder where my brother's head was when he married her 15 years ago...he is a really smart guy. You wouldn't know right away by talking to her that she doesn't "get it." I know the Dr's talk over her head. She probably retains 10%. I debate on hopping a plane up to Philly, but what would I do with Pierce? The girl that part-time Nanny's has another job; otherwise, I'd take her too!

Edit: My brother is back here at work. He would know what is going on, but wants to save his time off for when the baby gets to come home. This is another source of contention for me right now...to each their own. So my SIL is at CHOP with her mother...and you know the phrase the apple doesn't fall far from the tree? Let's just say they don't do blondes much service for breaking the stereotype! Smh

 

[aaronswoman79]

I was going to chalk it up to her being very young and naive until you told me she has been married to your brother for 15 years. Is she at least a nice/good person? You know in my experience I have known people who weren't very smart by nature but went on to achieve a lot in life. These individuals I have known made themselves smart through reading a lot and over coming their disadvantages. The mind can be exercised and it is possible to boost your iq. This lady needs someone to talk some sense into her. I mean, you haven't even met David yet and you seem more concerned. Sorry to judge. Maybe she is still in shock over everything? Sorry for all your family is going through. So sad that this poor innocent baby has to go through so much so early in life. Big to u Angel. I didn't realize your nephew is so far away. Its not easy to just pick up and go because Pierce is your first priority of course. I didn't realize how far away your nephew was when I suggested you go to see him. That would have been great if u could have taken Pierce's nanny to Philly with u.

 

[lilesMom]

Angel. I know,from Simon when he baby is in the neo
In an incubator and ur not sure what's wrong or if
Ur baby will even live, ur mind is not ur own.
I trusted the docs cos the were brilliant and dud all they could
I know ur hurting too but it's all so overwhelming
Going from min to min sometimes was all I could manage
Plus I had infection, stiches and crazy blood pressie
Not sure on ur suls physical state
But my iq is considered higher than average
And I didn't ask too much, cos I wasn't with it enough at the time
I'm not trying to sound harsh
But just so as u might know her side
hugs to ye all
Hope David continues to fight
Does the ward or hospital hveva good reputation?

 

[lilesMom]

S is a good deal better thank God
Hoping it continues
The raise hit him hard for 4 or 5 days
But better everyday now
Another raise next Sat and hopefully that works then

No news here really.
But that's nit a bad thing :-D
Love to all

Angel I hope my last post doesn't sound harsh
But it is so hard having baby in danger xxx

 

[xoxo4angel]

Not harsh at all Laura. I only mentioned her LD because I went to every appt they had here with the local Dr's and when we would walk out I would rehash the events so she had a clear understanding of what was said. I imagine time stands still and the mind goes numb for any parent regardless of cognitive disposition when your LO is fighting to survive. Perhaps my choice of words, "not smart enough," wasn't the right thing to say. My brother suffers from depression so the whole thing is really scary all around. I'll take a tip from Frozen and let it go. It's in God's hands.

Sorry Simon had a rough few days, glad he has adjusted. Have a good weekend.

 

[lilesMom]

Hope things continue to go,well for David.
I know it's really hard in ye all
Its tough when u really,want to help
In situations like this there isn't much that anyone can do.
I'm sure they r just gratefull ur there for them.
Xxx