where do I go from here? - Page 2

[Polliwog]

Nope. Anyone can ask for an evaluation.

[sesa70]

Thank you everyone for all the support.

The last couple of days have been a bit better. Not fantastic, but I'll take a small improvement!

She seems a little less miserable for longer stretches. Most of the day is still spent fussing and crying, but I have had a few small sessions of smiles and cooing. It has really made a HUGE difference in my mental state!

I also took her to a chiro, who did a small adjustment and suggested visits 3x a week for 3 weeks. Honestly that is more than i can commit to right now. I also started her on a probiotic a few days ago.

[heatherdeg]

Chiro visits are very frequent for the first month or two and then slow down once the spine is aligned and the muscles have acclimated to holding it in that position.  So it's not a long-term thing.  But it can work miracles for miswired neurology.  We have met people who say their kids only sleep through the night the day of an adjustment.  Would love for that to be my experience!  LOL!  My kids go 2x/week, but I have had to go back to 3x/week recently.

[swd12422]

Sorry, I don't have any suggestions beyond what others have already said  I have read elsewhere about probiotics being amazing for helping colic and fussiness, but I would definitely check for other things and look into EI too, just to be sure.

Hang in there. When DS first came home at 4 months, he was like that, too. Only I discovered that he was perfectly happy while out and about, just miserable at home! I would definitely recommend a change of scenery for both of you -- it might help a little, if only as a distraction. I was convinced that DS was unhappy to be with us, like he felt this wasn't "his" home. It really got to me, and I was depressed. I remember wondering if it was worse or not as bad as PPD, b/c it was pretty painful and I felt I couldn't talk to anyone about it. Fast forward to 3 years later, and DS is the happiest kid I've ever seen. There are days I can't believe this is the same child. Hang in there, it will get better!

[sesa70]

Hello everyone. I wanted to post an update, though unfortunately not a happy one.

We have tried the hypoallergenic formula (neocate) and she is currently on prevacid twice a day. We have seen a very small improvement. She is being followed by a GI. We went ahead and got set up to have her evaluated by EI and so far have had just the p/t eval. It was not good news. Her actual age is 3 months, her adjusted age is 2 months. Her gross motor functioning is at 1 month. She was found to have higher tone in her arms and legs and lower tone in her neck and trunk. Both of these I actually suspected. She also does not track consistently and her eye contact is spotty.  Those things combined with the incessant crying and fussing are major red flags to me.

The p/t says that it could be not a big deal, especially for a baby with reflux, but it could also be a symptom of something more severe. As of now there is really no way to know, just a wait and see thing. Of course I am freaking out. As the parent of one severe/profound special needs child, I simply cannot do this again. The whole reason we decided to pursue adoption was to avoid the severe/profound thing. Thats not to say I need to have a 'perfect' baby.... there is a lot we can deal with. We just need for her to walk, talk, feed herself, basically function at a level that she will be able to hold down a job, have her own life, feel fulfilled.

I have called our adoption attorney asking about delaying finalization, which should technically take place in August. She agreed and her suggestion was basically wait a while and see what happens with her development and our further evaluations. I am feeling like the universe is supremely unfair. Like we have put in our time and shouldnt have to go through this again. Like it is absolute torture to not know what this poor girl's prognosis will be, and that we are all bonding with her and like every day that she is here will be that much harder for us should things turn out for the worst. Not just for us, but for her too. Most of all, I cannot believe that we are in this position, and that this is happening.

[RedOakMomma]

Oh no. :(  Sesa, I'm so sorry!  I can't imagine the worry and grief of this new development for you, your family, and your baby girl.

I really hope some of her delays turn out to be from discomfort and reflux, and not from a developmental issue.  Kids can fall behind so quickly when they're not happy or when they have medical issues...it's entirely possible that she'll catch up once she's feeling better.  (Even with the tone issues...I remember reading about similar tone issues with a reflux baby on the SN board years ago...all the arching and fussing actually caused differences in normal muscle tone.)

You'll be in our thoughts and prayers.  Please email me if you need support.  I know exactly what you mean about wanting to adopt in order to avoid having another child with severe special needs.  There is only so much a family can bear, and if your family would be pushed to the breaking point by raising another child with profound needs, then I'm sure you'll do what's best for everyone involved. 

Hugs to you.

[Polliwog]

Oh Sesa, I can't imagine how hard this must be. For everyone's sake (including the little one,) I hope that treating the reflux will make a dramatic difference and that there is nothing severely wrong with her. I have no words of wisdom, but am sending you virtual hugs.

[Smithie]

[sesa70]

thanks everyone :(

This is probably one of the hardest things we have ever had to go through. My heart is breaking... for this little one who is very obviously miserable, for me and my husband because we barely survived our 11 yr old, and mostly for my 5 year old. She loves this baby, and no matter what we do will end in heartbreak for her. If we disrupt the adoption, I don't think she will ever forgive us and I don't think she will understand. If we parent another child with severe issues, her entire life is spent being the only healthy sibling in a family of children with severe needs. That is not fair to her either. I just wish this had never happened. I wish I could go back and never even start the adoption process. This absolutely wholeheartedly sucks.

[queencarr]

I am so sorry. I hope the reflux is the problem and you get continual improvement. The fact that you have seen slight improvement makes me think of 2 things, so I want to throw them out there: Jimmy (my reflux kiddo) did not tolerate the neocate at all as a baby, nor the other hypoallergenics. I was pumping and bottle-feeding at that time, band had to supplement and the formula intolerance actually landed him in the hospital. I was told he was a candidate for donated bm due to extreme formula intolerance should I not be able to bf him. The second thing is that after his reflux was under treated, it took a long time to treat to correct the damage, a couple of years, but he did get some relief right away. He took 2x the standard *adult* dose of 1 med and then a second one for I think 2 years. I think as young as she is, it is entirely reasonable that her development is affected potentially by this.
I don't have any answers for you, If I were closer I would come hold her and give you a break. I am sorry that it seems you have an impossible choice. Again, PM me if there is anything I can help with or you just need an ear.

[swd12422]

My heart breaks for you. I just deleted a huge post b/c I thought it might not be taken in the spirit in which it was intended, and I certainly don't want to create more negative feelings about this for you. Let your 5 YO help wherever she can to lighten your load, and let her know what a big help she is. And she may very well NOT find it unfair to her to be the only healthy child in the family. It's hard to know how kids will respond to what we feel are difficult circumstances. Sometimes they are far more resilient and positive than we are. I hope that you can find a clear answer to the baby's needs and hopefully a very quick solution to the issues she's having. And at the very least, a clear answer as to what you should do for your family.

[pumpkingirl71]

Sending hugs. I wish I could do more...

[lauren]

Is there any chance it could be really severe colic? (trying to be hopeful since colic has an end..) Since she is still under 3 months, perhaps? Was she premature?  Did your other kids have colic? I know that most people who have colicky babies do begin to think that something terrible must be wrong because they can't believe how much the baby is crying (my first was like this). I copied this little list in case it is helpful, from a google of colic.

Babies with persistent crying or any "red flag" symptoms should be checked by a healthcare professional to rule out illness. The top ten medical problems to consider in irritable babies with "red flag" symptoms are:^[75]

• Infections (e.g. ear infection, urine infection, meningitis, appendicitis)
• Intestinal pain (e.g. food allergy, acid reflux, constipation, intestinal blockage)
• Trouble breathing (e.g. from a cold, excessive dust, congenital nasal blockage, oversized tongue)
• Increased brain pressure (e.g., hematoma, hydrocephalus)
• Skin pain (e.g. a loose diaper pin, irritated rash, a hair wrapped around a toe)
• Mouth pain (e.g. yeast infection)
• Kidney pain (e.g. blockage of the urinary system)
• Eye pain (e.g. scratched cornea, glaucoma)
• Overdose (e.g. excessive Vitamin D, excessive sodium)
• Others (e.g. migraine headache, heart failure, hyperthyroidism)

[sesa70]

Thank you again everyone for the support.

We had the remaining evals, from both the D/T and O/T. I wasn't really a fan of the O/T but thats a different story. Neither of them were particularly concerned with her development. The D/T did not find her to have a delay at all with the exception of her eye contact and tracking, and the O/T was somewhere in the middle, agreeing she was not developmentally appropriate on her belly (poor neck control, jerky head movements) but was actually beyond age appropriate on her back and with her vocalizations. SO, now I have a really mixed bag to work with.

I think we will go ahead with physical therapy services, which is really no big deal, and just hope for the best. The idea of having her moved really made my husband and I both realise that is not a possibility for us... that pretty much regardless at point she's ours and we need to just hope for the best.

[swd12422]

I'm glad to hear they weren't concerned! That's usually a good thing....

We adopted DS at 4.5 months. When he came home, we were told he had low muscle tone, limbs that were alternately too rigid or too floppy, and they were concerned about his muscle development. The caseworker who came each month told me I "had to force" him to have tummy time, no matter how unhappy he was with it, b/c he NEEDED it.

Well, he's my first, and I couldn't stomach making such a tiny baby cry when he cried so much already. So I didn't do it, and figured I'd help him catch up later. He ended up crawling and walking at the "normal" times, and now, at 3, no one would ever think he had low muscle tone.

I think hoping for the best is really all you can do. It's so hard to know how they'll turn out, even a year or two from now, when they're so young. Good luck, I'll be thinking of you and hope you'll post lots of updates on how you all are doing!

[WifeMomChiro]

Did they check her for torticollis?  Those sound like some symptoms of torticollis to me.  That is easily correctable with chiropractic.